Patty, since you've been lurking, you know this is a great place to give and receive support. We not only talk the talk, we walk the walk here. Welcome, and do come back often.
I see you are still with us. This hide and seek is getting to be fun. Anything to amuse and old 81 year old lady. Seriously, if we can help you in anyway let us know.
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 good to see you here. I posted on your thread on the AA Forum. This will be a comfortable place where you can say what you feel and be among friends. We are all spouses who have lost our dreams. We help each other with knowledge and humor. Welcome to our home.
Linda. it's good that you've found us and been reading here. I hope you'll find, as I have, that this group of friends makes life more livable in the world of AZ, because indeed you're not alone. Share your problems, ask your questions, express your frustration!
My husband of 27 years was diagnosed with ALZ last September. As I look back, I believe that he started showing symptoms in early summer of 2006. He is 77 years old and I am 64. Our marriage is blended - his 3 adult kids and my one daughter (my son died tragically in 1991 at age 22). All of our family is scattered out of state. We have lived for 9 years in Georgetown, TX. I plan on staying here - our church and friends are here and it is easier for family to visit us. (Family members are scattered in IL., MI. and WA). The first 6 months after diagnosis I am sure that I was in denial. After all, my husband has always been in perfect health. He STILL is in perfect physical health. The first prescription drug that he ever took in his life was Aricept. He still exercises and walks several times per week. He is on a drug trial through a research Dr in Austin. I have been hoping for a miracle but now realize that miracles don't happen with this dreadful disease. He is on a slow decline - some days are pretty good but the bad days are coming more frequently. He never knows what day it is and seldom knows what month or year it is. Yesterday was our wedding anniversary - he did not know. I mentioned it to him casually and he seemed only mildly interested. In the past our anniversary was always a big deal - as recently as 2 years ago, we had a big night on the town in Austin and even stayed at the Four Seasons hotel. I try to live one day at a time. The best advice I have learned so far - (from the Austin ALZ group) - is that behavior modification is required; NOT behavior modification of the ALZ patient but rather behavior modification of the caregiver is required. I am trying to digest this and put it into practice. My biggest problem right now is that I am frequently short of patience. I get frustrated and angry and than feel guilty. Thanks for being here.
Welcome, former soulmate. You have come to the greatest place there is - a place of vent, rant, ask questions, whatever you need at the moment. Someone here has "already been there - done that". It has been a lifesaver for me. I'm so sorry you are going through this, but i guess we are all in it together. Take care of yourself and post anytime. Hugs to you.
Welcome, former soulmate. I'm sorry for what you're going through, but glad that you have found us. The "behavior modification" that you mention sounds strange to me: I think what we have all needed to learn is more a change of attitude (and, OK, that results in different behavior). It really helps the day-to-day frustration (or at least, it helped mine) when I learned to pick my battles, not argue or reason, not confront dh with his shortcomings, but encourage, go with the flow, etc. It makes the LO happier, so the caregiver is happier too. Kind of like having a small child again: Mom is happy if the child is happy and vice versa. Well, you'll find it all here on these boards, where you'll find lots of practical information and -- most importantly -- good friends who are going through the same thing you are.
Welcome to my website. 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 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.
ej of Sacramento About a week ago, I first visited this web site. I saw the comment on "sadness" which is how I am feeling. My posting elicited 9 ans, appreciated. Also I am totally lacking "blog" navigating, so be patient. At 84 things have slowed down considerably. My sweetheart of 62 yrs is in a Alzheimer's secure facility in Auburn and this is the beginning of th 9th yr since her diagnosis. She is basically a happy person, former LVN nurse, and the nurses get along fine with her, they tell me. I think that I can feel some relief in being able to visit this website I am hopeful that my interest will be for the long term, and that I can be a contributor and supporter. Many thanks to Marsh for his support, and all of you.
ej just go to any subjuct that interests you, go to the bottom where it says add your comments and have at it. Just be careful to click on "add your comments". If you click on "back to discussions" your post will be gone in a puff of smoke. By the way-most of us have done it and felt rather dumb. (or at least I have)
And, if it should say there is a problem with your post, just hit 'add your comments' again.
I am impressed that at 84 you are learning to navigate the web. My husband is 61 and has never had the desire to do anything on computers that he doesn't have to.
Katie, the messages are not for any particular person but are "posted" for everyone to see. You can open any "Discussions" by clicking on it in the list, and then scroll through all the messages that have been added. Every time you open a discussion (also called "thread" or "message board" that you have been into before, the screen will automatically open at the place you were last, showing the new messages that you haven't read yet. Some of them may be addressed to you, but all messages (or "posts") are available for everyone to read. In this way you can get all kinds of information (some that you didn't even know you wanted. Does this help? Delve in and give it a try.
Hi, I'm new and I'm so glad I found you. I'm 70, my DH is 69 and was diagnosed with Posterior Cortical Atrophy in April 2007. It has been devastating. His eyesight has been changing a lot. He can't judge distance...stopped driving before he was diagnosed because he knew he was not able to do it. We're coping but some days are really bad. Right now he needs help dressing but most days he can manage his shower and get partially dressed. He has a big problem with buttons! He is aware that his table manners are not what they were and I think that bothers him. He's not comfortable eating out although we still do at times. At times he gets confused finding a room in our house. He told me yesterday the laundry didn't look right! He still gets outside each morning and feeds his birds. Currently he is on Aricept (couldn't tolerate Namenda) and in April of this year he began a clinical trial of Dimebon. I know he hasn't improved and I think he has actually gotten worse. I'm hoping he is on the placebo and will respond to the actual medication. He will be able to start that at the end of the trial which is late October. I'm looking forward to learning from all of you who have been on this road much longer than I. Hopefully, I will be able to contribute something for you. I didn't mean to write an entire book!!
Janie, welcome, sorry that you need us but glad that you have found us. It is a good place. Hope to hear more from you soon. If you need help finding your way around the site, just ask.
Welcome, Janie....I can so relate to your post. I have found this site so helpful in understanding what is going on and what to expect in the future. You are not alone and you will be joining a wonderful family.
A quick dash through and a BIG thank you ! I'm so glad I found you. This is a wonderful. caring group and I look forward to being with you on this journey. I'll join in the discussion later tonight. Thanks again!
As horrible as this darned disease is,... hope you can hang on to a semblance of humor. Sometimes, we get a little carried away. Also, need to let you know about one guy on this site named Phranque who will try to get you on his (imaginary) cruise ship .. so be warned and beware! He is in the Landscape business and I think he sniffs Fertilizer.. ... NancyB
I am not new to this site but it has been so long since I logged on that I feel I should be in the new category. I'm still out here and still going to see my husband in his eighth year in the nursing home and his 18th year of this horrible disease. It shows no signs of ending or even diminishing. Never mind that he doesn't talk, open his eyes, walk, or respond in any way except an occasional grunt. It just goes on and on and on. When does this end stage end? Sandy
Sandy, I don't usually read this thread but just happened to tonight. I didn't know AD ever, ever lasted for 18 years. Please stay with us and tell us how to cope for that long.
Sandy - it does occasionally go on. My FIL was diagnosed in 1985 at age 64 and still going. He walks the hallways of the VA Alzheimer Ward. He mostly is in that 'blank' state but the nurse says he will feed himself once in a while and still has the smile on his face. (we live in WA and he is in MA so we don't get to visit). I just hope my husband does not follow the long trip his dad has. Sorry your journey is so long - it is horrible.
Hi. I just made my first post this morning under EOAD, but I'll post here as well. My wife, 63, was diagnosed with AD this June after having been initially misdiagnosed first with stress, then with anxiety, and then with depression. I had seen signs of AD as far back as 3 years ago, but the neuro dismissed my anecdotal evidence and went simply by his own testing and face to face visits. Eventually, we did go for a 2nd opinion and the diagnosis was AD. She was placed on Aricept and enrolled in a Phase III clinical trial to begin in January. To date, I have not noticed any positive changes due to the Aricept ... but, of course, had she not been on Aricept for 2+ months perhaps the declines would be worse. My wife has not declined gradually. She seems to 'fall off a cliff' and then plateau out, then fall off another cliff before stabilizing again, etc. She is probably in her 3rd or 4th year of AD, I think moving from early to moderate stage, despite the diagnosis coming only 4 months ago. New steep cliffs seem to be coming sooner than they did before. Do any of you see similar patterns with your spouses ... falling off cliffs as opposed to steady delcines?
acvann your description of falling off a cliff is perfect. They seem to stabilize then drop. They may come back a bit-but never as they were before. The disease is relentless. Welcome to our family.
Hello all. I have been traveling along the AD road for 3 years officially altho I saw signs back in the late 90's that my wife was having memory problems. She is on Exelon and Nemenda twice a day. I can't comment on the results because she went on them as soon as diagnosed. Current condition is severe loss of recent memory, lots of sleeping, not wanting me out of her sight and no longer doing any cooking. I had a very difficult time getting anyone to come in and stay with her. First hard to find someone, then she did not want anyone in "my house". Lucky I moved closer to my two sons 3 1/2 years ago.
Welcome Hurlybird, sorry you have to be here but it's a nice soft place to land. Joan will be along to welcome you but til then, know we are your new friends and will be glad to learn more about you and DW (dear wife) and share experiences and maybe even a few solutions along the way.
Welcome to our family, Hurleybird. You will find everyone understanding of whatever issues you have. Feel free to ask questions or just rant and rave when you need to! Another hug (((((hug))))))
Welcome, Hurleybird. There are a few of us men taking care of wives here. DW is 79, I am 78. She is now in stage 6, so I am having to do almost everything for her. My biggest salvation is being able to take her to Adult Day Care three times a week so I can exercise, shop, get a haircut, etc. You'll find that the women seem to do most of the comments, but occasionally one of the men will chime in. Men and women are different.
How profound! I suppose he can make that statement unequivocally, because he was a doctor. ... (grin)
Hurleybird....Welcome to our special group of friends. We're always happy to receive new members. Hang on, ...you in for quite a ride and we'll be sitting next to you all the way.