I decided to come out of the shadows today. Big step for me. I've been lurking since Joan started this blog. This is an amazing place with a lot of amazing people. My husband bugs me constantly to join in.
He knows how much comfort and knowledge I get from coming here to read. He doesn't know much about this disease and all he really WANTS to know is that I love him, will always love him and trusts me to take care of the rest. To know more would only scare him.
Tom's 52, diagnosed at age 50 with EOAD. I have to say that between 2002 and when he was diagnosed was harder than now. It was like riding out a hurricane and than with diagnosis I had the mess he made out of our lives to clean up. And figure out WHAT this disease was and how to handle it all.
He is the love of my life. I'm 54 and we have been together for 16 years. We have been married for 9. I have 4 wonderful children from a previous marriage and 8 grandkids. They all love Tom to death.
He went on aricept after diagnosis. I fibbed and told him it was to help with his anxiety. He had no idea at that time he had Alz. It made a noticeable improvement in his memory but now I notice he is starting to slowly decline. He's noticed it too.
I guess that's why I'm coming out of hiding. I know right now is as good as it gets. I've had 2 melt downs a year apart. I was put on zoloft the first time. Than went off it, just to be put back on it again. : ) The Dr. said the stress in my life isn't going to go away any time soon so maybe I should just stay on the zoloft as it's apparent I need it. : ) I sheepishly agreed.
I feel good about taking this step and joining you all. I don't know where I'd be without this place. It's like "A Soft Place To Fall," Thanks Joan!
So glad you are going to contribute and glad you have been enjoying this website. It is like a lifeline for me too. I check in multiple times a day and this is my favorite place to be. You are both very young to have all this dumped on you both. Just jump in and give us your views or questions.
Welcome Cynfany, Glad you came out of the shadows. I am sure we will all gain from your input. Chuck & I are contending with EOAD like you are. Chuck is 55 & I am 54. Chuck started on Aricept and it did not work well for him. He is now on Razadyne and Namenda so you may want to consider new meds for Tom.
Another welcome, Cynfany. I like your statement that this is a safe place to fall. Yes it really is and you will see many of us fall from time to time. We help each other back up.
Welcome Cynfany!! i agree with sunshyne how could you resist so long??? i barely can read one post without writing to every comment..:) it will be of much benefit now for you to join in discussions and comments, there are several here with EOAD spouses. it does the soul good to get it out in the open and things off your chest! we understand, divvi
Welcome to my website. So glad you finally decided to come out of hiding. There are many here dealing with EOAD. If you go to the top of the page, and click "search", then write in EOAD, and make sure the "topic" circle is filled in, you will get the many EOAD discussions on this board. We are here to help each other, and I am sure that you will have much to contribute.
Also, if you have not already done so, click the EOAD section on the left side of the website - www.thealzheimerspouse.com.
Thanks everyone for the warm welcome. There's been times I wanted to jump in so bad but than emotions would get the best of me and it's one place I can't go. It's vital I stay strong, happy, upbeat all the time. Zoloft helps. : )
I chose to come out today because today we went and did POA and Health Care Directive. We live in the woods and Tom doesn't like to leave his safe haven so it was an adventure. He did well because he was more than happy to give me complete and all control of himself, to me.
The lawyer had us in stitches because Tom didn't want any stipulations at all. The lawyer said you trust her that much. Tom says yes I do. So the lawyer asked if he could at least put that, I would profess my love for him when making medical decisions. Tom laughed and said I don't care. So the lawyer did and he said he's never done that before in his 30 years of practice.
I needed to do this now because Tom only agrees to go once a year to our regular Dr. and that's just to have a routine check up and med. refills. He refuses to see anyone else and says he won't take any more pills either. The Dr. he needs to see said he would communicate through email if i had Medical Directive. I know he should be at least be starting the namenda. Guess I'll have to get sneaky again. : ) I've gotten pretty good at it. hee hee
Thanks again for the welcome. I hate this disease and I refuse to let it get the best of me.
cynfany, well, now you have something to look forward to. Pretty soon your husband won't remember what month it is, and you can sneak in appointments more often than once a year, if you want to!!
Cynfany, don't give up your drugs. I have had meltdowns too. Zoloft is a nice pill that will keep you steady and even. I stopped taking it because I couldn't laugh or cry or feel any emotion. Then on to Wellbuterin which did nothing but I now have Effexor and that is wonderful. I feel like crying I do and have done a lot since my DH was dx. If you have been reading the comments for some time I guess the Rule #1 should be. Be KIND TO YOURSELF.
Being that our LO are sick and need us we have the instinct to take care of them and then time for us. Don't get me wrong their is nothing wrong with that but take time for yourself.
I have my Red Hat Society sisters for physical support and comfort but this website is for much needed mental support and you can get up in the middle of the night and read some comforting words of wisdom and insight "sighhhhhhhhhhhh" and go back to bed.
I'm new too - saw a reference to your website on the Alz Society pages. I'm 52 and my husband is 63 and we have a daughter who is a junior in college. We've been having symptoms (looking back) for about 7 years now and only got a diagnosis 2 years ago. Exelon and Namenda really helped but the rate of decline is now accelerating. We have no family close by. I am truly afraid of what is coming since so far there has been no anger or otherwise uncooperative behavior. The hard part for me has been that my husband becomes more and more passive and incommunicative each day; so that the lonliness has been sometimes so bad that I cry for hours. I take Celexa just so that I can function. We are fortunate in that we took out LTC insurance about 5 years ago so when the time comes for additional care, I will not have to bankrupt our little family. And a friend in my bookclub who is an estate attorney helped me to draft all the documents. I'm good at taking care of all the business things - it's the loss of my best friend that has been devastating. I go through periods when I'm OK, getting adjusted to a stage of the disease and a rhythm, and then a new symtom appears and the sadness takes over remindeding me of the inevitability of his dementia and eventual death. This disease is in your face all the time, I can do nothing, and I'm so angry.
Y'all have such supportive things to say to each other. I shall look forward to reading your messages to each other and learning how better to cope with these changes in my life. And someday perhaps I will find a path through the maze and be able to help someone else.
tiggermom, welcome to our little family! Please post whenever you feel like chatting with us. Just sharing who you are, and where you are in your journey, are helpful. We need each other to help dispel the loneliness.
Please remember that every AD patient is different. You will see many posts about serious behavioral problems simply because those are so difficult to deal with, the caregiver needs lots of extra love and support.
Only one-third of AD patients ever develop symptoms like anger and aggression, and even then, it's a stage that they go through, and then it stops. Two-thirds NEVER develop these symptoms.
My neighbor's mother recently died of AD, and she remained sweet-tempered and loving to the end.
Thank you Sunshyne for the welcome and the information - my husband has always been a kind and thoughtful person and at least I may have that to the end.
Welcome Tiggermom, I am sorry you have the need to join us, however, you will find friends here who will listen, suggest & never judge. You might want to vist "Where Are You From & What Ages? My husband is 57 year old, started having memory problems 5 years ago.
Like tiggermom, I'm just afraid of what's coming next .Because of the BIG change when Tom went on Aricept, now that he is showing decline, even though it's gradual, I just have this feeling that something is lurking in the shadows, and I'm not sure I'm ready. Everything has been working out well lately and that's about the time you get hit from behind. And even though I've managed this far just reading, Zoloft or not, this is the place I want to be. You guys are kinda like a life jacket. I think I'm ready but in my heart I know I'm not.
This far I've had my family and they love Tom and they're supportive but nobody really understands how a spouse feels. Only one daughter has acknowledged the emotional pain I must be going through, loosing my best friend. The rest feel bad but are more sad that I'm not having a quality life. The disease is starting to isolate us. My family gathers for holidays which is something Tom can't handle anymore. He can handle company in small numbers for short periods.
Jenene56, I do put Tom first. My girls make sure I take care of me if they see neglect. The zoloft keeps me thinking clearly, and I can still feel all my emotions. They just don't control me. I don't let myself get too down. I really focus on the good, and put the bad and the sad away. I'll have time later when Toms not aware to go there and mourn.
Welcome Tiggermom! wow, i am seeing so many newbies lately and not realizing who is who or who is new:) know that you are in a safe place among new friends who care and know exactly whats going on, divvi
Hello Tiggermom - Welcome and we are glad you found us. My DH is 73 and it in 5-6. He has not shown agressive behavior yet and I am hoping he doesn't. Actually I don't think he will because his voice is very soft and low now and he has trouble formulating sentinces. The speech has been better the last month since I eliminated or changed a couple meds.
I'm so glad to see more people coming here to find help and support. For a long time, I didn't even think of going to the internet for help, and I am greatly relieved not, just to know that what I'm feeling is not unheard of, and I am normal to feel as I do. this site is the best because we are all spouses, and being a spouse is a great deal different from being the child of a parent with AD. Your entire life is affected, and every waking moment, and even our sleeping moments are taken up with this disease. Thank you Joan, for seeing a need and filling it, and welcome to both of you Tiggermom & cynfany. I'm sorry for your trouble, but you will find comfort ans support here.