I want everyone to know I appreciate all the comments here. I am living with my lifelong love and she has early onset. Her short term memory is all but gone, and to watch this is just about more than I can bear. We went to high school together and she was very smart, never had to take tests because she had such a grasp of the subjects. The memory loss has been such a problem because of my lack of understandng of how this disease works. It is so frustrating that at sometimes I think I am going to crack. When I first read some of the comments here I was crying before I got through them, but at least I now know I am not alone in this. Thank you all very much
Welcome. So sorry this horrible disease has afflicted your loved one, and affected both your lives. But since it did I am very happy that you found the website Joan started.
You'll find many here who will relate to practically any feelings you put down on this forum. So there are plenty of broad shoulders here. Relationship issues for spouses of ADLO's are indeed different from the adult child-aging parent caregiving relationship.
Feel free to post any questions, or just vent your thoughts and feelings. You've found a soft place to land.
Welcome to my website. I know how stressful, sad, and overwhelming all of this is. We are all on the same miserable journey, but we are here to help each other.
When you get a chance, look on the left side of the website, and click on "previous blogs". There is so much there that you will be able to relate to.
But first, please scroll down the front page of the website for Wednesday's (2/6/08) Announcement about Early Onset Alzheimer's Disease. Read and meet Tony, and click the links to the articles about him and his struggle with EOAD. Also, check the Message Board Topic, "Who Speaks For EOAD ". It is on the first page of the Message Boards - you don't need to scroll far.
Joan, just a quick question...would there be any way that we could have a place on the website where we could post our names and just a little about ourselves? Something like a reference point....I get confused with all the different people...LOL...!
My, what a good idea! I am very protective of everyone's privacy, but I could put up another topic section on the left side of the website - MEET OUR MEMBERS- or something like that, and invite people who want to participate to send a little info about themselves that they would like to share. Also, e-mail addresses if they wish.
I'll work on that - If I can find some extra time this weekend, I'll put it up. If not, look for it by the end of next week.
Thanks, Joan....I think a lot of us would find it useful.....I, for one, wonder where everyone lives, how old their LO is, etc. etc. etc.....Nosy, aren't I? LOL....
Lew: I know exactly how you feel. I married my grammar school sweetheart and as his memory left so did our conversations and mutual memories of our lives from childhood. I knew something was wrong, but the idea that it was a brain disease never entered my thoughts. I went thru years of misunderstandings and no knowing how to react to his AD. I had a lot to learn. If you go to http://geocities.com/caregiving4alz and read 'What you Need to Know' it will help you understand what she is going thru. Meantime, don't hesitate to ask anything or express anything. Unfortunately we're in a very, very, very big boat, but we can help each other and know that none of us are alone.
Lew, I know exactly what you are going through. I have been crying every single day since my darling husband has been diagnosed. I feel like I'm losing my mind and now, I don't even care. I can't stand that this has happened. I want to get all of you people together and just hug all of you - I've said it before and I'll say it again, I wish you all lived on my block so we can all sit together and really help each other. This site is my saving grace - because there is no where else I can go. I come here many times during the night and early morning. I had to put my love in a daycare but it is good for him - but God am I lonely in work all day. I don't want to talk to anyone there about it - they are kind but none can understand. Only, you my new friends, can ever understand what I am going through. I know I should try to get on with my life but right now I don't want to.
One thing a time. One day at a time. You are not ready to "get on with your life" yet. You need to learn all you can about AD; get as much support as you can; grieve and mourn what you have lost, and take as much time as you need to do it. We're open 24/7 - write whenever you feel the need; read the previous blogs and all the other information on the site whenever you have the time. And cry as much as you need to. We all do.
Hi Lew, I am very sorry that you are going through this. I am glad you found this place and hope that it will help you as it has helped me. There's something so very lonely about what we are going through. On the days I find particularly cruel in their theft of my husband, I can find some comfort here. Maybe you will too.
Hi Lew; If you have had a chance to read my story then you know as others here have said you are not alone in dealing with this dreaded EOAD. The loss of your spouse as she slips away from you befor your eyes has to be one of the hardest things to deal with. There is a lot of good advice here from others who can relate to your pain and help to answer your questions.
Hi Lew....... I,m Dan, as the others have said , this is the place to be for the information and comfort you;ll need in dealing with this god awfull desease.... My LO was in her mid 50s when diagnoised ( she;s now 60 ) which may be older then your wife but never the less it sure is a tramatic adjustment in your life.. Read what you can about AD but as with me I read enough to know what I wanted to know and I quit cause it only depressed me.. My attitude now is, I live for today I don;t look back and wonder what coulda woulda shoulda and I do;nt dwell on what the future will bring... Good luck my friend and hang tuff
Thank God I found this place! I just read all the comments to Lew and knew I was in the right place. Me 60, my wife 61, she was diagnosed about 5 years ago and it's finally getting to me. I'll just explore the site a bit more but I am so thankful that I now have a place to "talk" to someone.
Larry M, Welcome to you and all the guys Tony has allowed knowledge of this (JOAN'S) site. So sad this AD journey but So thankful you found us to share and be informed and comforted by people that experience all or some of what you do. Write often; someone is always stopping in. Thanks for sharing, PAT
Welcome to my website. I am sure you will find the support and information you are looking for.
Since we have so many men now writing in and reading, I am planning a special Blog just for you guys! It will most likely be at the end of next week. Come back often.
I also agree with Sandi, I get confused with so many people. I would like to be able to look at a glance and maybe see the persons screen name, age of loved ones, How long diagnoised, the stage of the disease, and if careing at home or have already placed. Just a quick glance at these statistics would help me not to ask the same question over again to the same person.
As of now I try to focus on one or two people until I feel I know them better, then move on to the next one. I would like to know everyone at once and I think Sandi's idea is wonderful.
If you click on your name, you will be taken to your account where you can add information concerning yourself your LO and just about anything you would care to add. You can click on any members name and at least see the basics the member has entered.
THANK YOU. THANK YOU. You just taught me something about my own Message Boards that I didn't know. You saved me DAYS AND DAYS of work - I don't have to set up a profile page. All I have to do is write an announcement on the website about people going into their accounts and adding information.
I'm not a total techno dolt, honestly. It's just that this forum is not supported by my host server. There is no technical support number to call to ask about the inner workings of the board. I'm always too busy with everything else to fiddle around looking for things. THANK YOU AGAIN.
Good evening to all of you. My name is Steve and my wife of 41 years, Mary Lynne (age 63), has EOAD. I July, I had to put her into a long-term care facility because she hated my cooking (was down to 100 lbs), our house is full of stairs (a major safety risk), and all bedrooms, shower, etc. are upstairs, posing yet another major falling risk. Needless to say, I am full of guilt.... A terrible thing about her disease is that she still UNDERSTANDS much of what is going on -- she knows she is not coming out of the facility -- and she begs me to take her home and not to let her die in there. I read a few of the other blogs on this wonderful site, and I am experiencing what others have -- our friends stopped calling or visiting, because they just don't know what to say. Learning to live by myself is hard, but it's not about me. It's about her -- and just doing my best to making the rest of her life the best it can be. Thanks,
Hello, I just joined your website and am in the big boat with you all, caring for my AD husband now going on 9yrs. he was diagnosed '00 and i am his 24/7 caregiver with outside help 2/wk. I agree, i belong to other alz groups but only those who have a spouse afflicted can understand the pain and loss. plus my AD husband is 18yr older - leaving me at 56yr old now 10yrs alone and struggling with the same issues. finding cyber friends who relate and discuss common subjects is a great relief. hoping to add/detract any support- Divvi-new member
Welcome to my website. I am so glad you found us. Take some time to read the "previous blog" section to find topics that interest you and to which you can relate. (There will be many, I am sure.)
We're all struggling, but we are here to give each other support and information. There can be sympathy from others, even others who are caregivers to family members with AD, but the marital bond is different, and this disease affects spouses in ways only we can understand.
Hi Everyone, I am new to this website. I found it after reading the article that was on the CNN webpage a couple of days ago. I can't tell you how grateful I felt to find a group of people who understand what it feels like to be the partner of someone with AD. Lyle and I have been together for 22 years. We are 28 years apart in age (I'm 52 and he is 80) and I'm amazed to find so many other couples who are so far apart in age! The more I read here, the more I am seeing that my/our situation is not unique as I had thought. I hope there is room for me in this shaky boat we're all in. Nice to meet you all! Diane
Hi Diane, Welcome to Joan's site. I know you will get lots of info and support. We are all in this together and will always be here for you. Almost bedtime, need to read more fast. Lots of hugs from your new online friend. PAT
Glad you have found the site and joined in. We all seem to share many of the same struggles, and find lots of understanding support here. I'm Diana, my DH is Paul. I'm 47 and he's 71 (24 yr. dif). We married in 1989, each with young children who are now adults. We had two of our own who currently are Soph. and Seniors in high school. Paul was diagnosed in 2005. Ironically, just a year before he was diagnosed he was helping me as I cared from my Mom who had cancer, and my own father who has AD. Paul is home with me, still quite able bodied, but unable to safely care for himself. My father is in and Alzheimer's unit. So AD has been a major part of my life for a number of years now. I sure looked forward to getting my life back after my Dad's placement. My mom passed on in 2005 and 6 weeks later my DH had an elective day surgery. His problems coming out of the anesthesia, and his antics and noncompliance in the next couple of weeks is what led to the further testing and diagnosis of AD. Matter of fact, my 45th Birthday I took the call from the doc's nurse confirming the MRI's show probable Alzheimer's (since then, more definitively diagnosed). Happy Birthday to me, huh? I do indeed relate to ALL AD spouses on some level, but particularly those of us in May December marriages. We didn't anticipate or want to believe that we may be in this boat while we were this young. My DH was so athletic and more active than I, so when we married I figured I'd wear out before he did. AD sure has a way of interrupting plans, doesn't it?
Hi Diana -thanks for the welcome. yep i also had a super brilliant 17yr older spouse who was a brillant lawyer. plus he didnt remotely look his age or act it either and we traveled eveyr yr snowskiing around the world and cruising. all thats gone now. i so miss having an intellectual conversation with him nowdays. hes so sweet and i have him home and deal with incontinence issues on top of it all. but i try to keep my word 'in sickness and in health' so far so good. i wouldnt place him unless he needed expertise care. anyway, i am surprised to see also so many of us with older spouses! we have been married 15yrs together 18 this march. yes, AD has its own mind of who it will take like it or not..looking forward to meeting everyone here. Divvi
Welcome divvi. It is good to find a place for those who are also dealing with spouses with AD. There are so many things we miss now and our life has changed, like yours, from traveling and enjoying life to being caregivers. It is a lonesome existence. My husband was diagnosed six years ago and the last year has been a real down hill journey. I placed him in a home two months ago. We had some problems where he was and I moved him today. This was so hard and means adjusting all over again. Unlike many of the rest of the spouses, I am older than my LO. He is 65 and I am 73. We have been married 31 years. He did not have children, but my girls love him dearly and have been so much help to me. My younger daughter has been staying with me for the last two months to help me. I do feel so fortunate to have her here. Darlene
Hi to all ! I was so glad when my niece told me she ran across this website and I might want to check it out. I attend a support group that just started but no one there is facing the spouse AD, it is a parent or friend or neighbor. Hubby was diagnosed in 2004 and I have just left work 6 months ago to be his fulltime caregiver. At this time, I really have no regular "time away" or relief. So far for the most part, I am handling it better though than when I was working and under stress there also. We've been married 36 yrs this May, we were the couple that everyone said would never make it. Our kids are grown and they are struggling with the issues some better than others. I was in denial at first and so "quiet" about the situation. Now it is so obvious for the most part, I would rather that someone just know and whether or not they are judgemental. Our friends ran the other way too for the most part. It broke my heart at first and then again, it gave us space and new friends that are becoming more the "be with you through thick and thin" than the ones we felt were close. That is so important. For us, we have found that if we help someone else with their problems or can donate time to help another that makes our problems seem less dominant. Ive become more active in a charity project since I am at home more, and then we visit his friend with cancer and do little things to brighten some who just need a cheerful word. We've always said what goes around comes around. Not that we are LOOKING for that by any means, but we have seen it happen time and time when we least expect it. God bless all of us with our struggles in this monster of a disease!
Hi Ladies, yes its good to see specific topics here with regards to married couples with AD. its shocking how many new younger spouses are here too. this disease seems to be running more rampant and at earlier ages now which is just so devastating to those younger couples stil with children in the homes. i feel so for that situation its hard enough being retired and no kids at home and dealing daily with AD but to have small kids on top of it all its just too overwhelming to imagine. i too believe what goes round comes round and have also seen it many times over as well. we only have occasional friends that call sporadically to ask the same question hows my husband and the same answer- hes slipping away little by little. its a strange disease that can be classified as non contagious, yet send family and friends running for cover as soon as ones diagnosed. you certainly know who is your real friend after all is said and done. i am now going on 9 yr of caregiving and in the beginning i thought like everyone else i would go mad and panic atacks and not knowing how i could manage, but over th yrs you harden and mellow at the same time, doing what you have to get thru it be it pleasant or not. its a continuing battle on a daily basis, one day at a time. wishing you all the best, Divvi