Jimswife recently posted under"Newly Diagnosed Husband" Hi & Welcome, I am so sorry you have a need to join our group, however, I am sure you will find everyone kind & helpful. You most certainly have your hands full. My husband is 58, with FTD. Please feel free to post at anytime.
Had some problems, Dazed. You know how that goes... And she hadn't had a chance to say "welcome" to a couple of our newbies (why the heck do they ALL show up when I'm out of pocket, I ask you?), so I thought I'd do the hostess thing until she officially un-delegates me. She probably needs time to recover from the cruise! <grin>
yeah, sunshyne what gives, you go on junkets of disappearing acts! i always think you are into some sort of scientific quest for more med info:))and will be back with tons of input---hope all is well now whatever it was..divvi
Some AD-related, and some not. We've had some wacko bothering us on and off, pounding on the door, ringing the bell, trying to get into the locked mailbox, climbing through the bushes to try to peek into the windows, leaving and then sneaking back and standing on the front porch very quietly for ten minutes. Lovely stuff like that. Never says anything, never leaves anything, never parks a car where it can be seen from the house or drives past the house when he leaves.
Husband has gotten increasingly paranoid. (Fancy that.) Police haven't made it here in time to catch him ... even the time he pounded on the door for half an hour. But I think the guy was still in the neighborhood and saw the police show up right after he quit, because we haven't been bothered since then. It's been a little over two weeks of peace and quiet, now, and husband was getting back to "normal". But someone rang the doorbell again Saturday -- I'm pretty sure it was just some guy trying to get us to hire him to care for the yard or something like that, he wasn't aggressive or anything -- and husband went off the deep end.
I'm sure he'll settle down again in a few days. I'm not so sure I will. <grin>
Ooh, Sunshyne. That's scary. No wonder DH went off the deep end. I would too. If anything unusual happens around here, I get real paranoid. Someone knocked on our door at 2:00 AM one night and I thought my heart was going to beat right out of my chest.
Welcome to all the newbies posting here. WOW.. That is so great to see so many although we are sorry for your need to be here, we are glad you found us. Keep us busy reading and replying to your posts.
Welcome everybody NEW! so many new names, amazing! who opened the flood gates, joan???? imohr you may finally get more posts to read into the wee hrs:)divvi
Mary, .. My knot is frayed..and my hands are raw...Went to a Support Meeting and walked away knowing my situation is not as bad as other peoples. So, should that make ME feel better. One member is faced with her 85 year old healthy father coming over to her home where she is caring for her Stage 7+ mother..who has a catheter, has to be spoon fed, is non verbal and is totally bedridden. Her lament was that she can't keep her dad out of her mom's bed where he tries to have sex with her every chance he gets. Has the world gone mad? The daughter has demanded her father stay away from her house. Her siblings are saying she is being "unfair and unreasonable". Go figure!
Nancy - just remember what is horrible to some may not be to others. Years ago when I started counseling for sexual abuse I learned that. There was a woman there that had one small incident with an older boy (she was 5 he was about 12), which to me was very minor compared to my sexual abuse, but she was more traumatized by that one event than me with all mine.
The same is true with our spouses (or parent, sister, etc) - we are all made differently and have different thresholds. So don't beat yourself up (or feel guilty) for feeling just as frayed when someone else seems to have it worse. It is your story, your life and your threshold. Be kind to yourself, allow yourself to be where you are and do not minimize your feelings.
Thanks Charlotte for your support. I've found this web site so strengthening...that others have been told "He seems perfectly FINE to us!"...or "I spoke with Dad on the phone and he sounded like his old self!". I would want to SCREAM! He'd have no recall whatsoever of even speaking to his son! -much less remember anything that was said. I also noted that when HIS children called, they did all of the talking...and he'd just say words like "Well, how about that!" or "Great!". Would we make up such a horrific tale about our DHs?
I don't know what your situation is, but I hope your life is more peaceful than most. I say "This is my kind of normal'... and it really is. With him 24/7.... no one comes over to visit anymore. He's run everyone off. I don't know how I will ever find the old me again. I've lost her.
Nancy - you will never find the 'old'. Remember we are every changing - we are the sum of all our experiences. The only people that don't change are those that don't live. It is what will the new 'me' be. I have endured so much garbage in my marriage that I am nothing like I would like 'me' to be. Now his illness will keep making 'me' different. This site will help you to keep an 'eye' on you so you don't get lost in his illness.
My husband has amnesic MCI - really just more than normal 'senior moments'. Due to family history of Alzheimer, he has a greater chance of progressing to AD.
We are currently among the unemployed so I have no idea what kind of work he will be able to do. The last park we worked at I had to make a speadsheet of what needed to be done and he used that until he got the routine down. (We are Workampers meaning we live fulltime in an RV, travel and work along the way).
We have found a job for this summer at a park in Idaho - within a days drive of Portland for his doctor appointment in July. The park is aware of his short term memory problem - I am just hesitant as to whether it will be too much stress for him. It would be working in the store with me vs doing outside work that he likes. He doesn't use computers but will have to learn the basics. I haven't excepted yet - have til tomorrow to give an answer. I want to take as this may be our last chance but then I am fearful he will not be able to handle the stress. But, we will never know if this will be the last until we try. We applied as a park host at a county park but didn't get it. That would really be the ideal situation.
At least when we end our job after Labor Day he can apply for early SS which will help. If he does progress to AD, then we can go for SSDI. He has surprised me the other day by asking me if he had already told me ........ instead of just repeating.
I have never heard of amnesic MCI. I am so new in the world of neurology and brain disorders, though, it's not surprising. I imagine that traveling to different places will eventually become very difficult as I'm told most AD patients need to stay in the same place and have the same routine. That's why we don't even visit the children as much, because he forgets where the bathroom /bedroom is. He can go from his bed to the bathroom with only the nightlight on at home. It's so familiar. We've even stopped going to restaurants to eat. I order "take out" from most restaurants in the area. Mexican, Chinese, Italian, country style (Cracker Barrel )...we have it all in Houston.
Have you personally made plans about where you may stay when he gets to the stage he cannot work at all? Bless your heart...thanks for your sweet words.
Nancy - not sure. Hopefully that will be a few years down the road. When he can't work, I will be the one working. If we go for state/county/federal park host which usually involves cleaning bathrooms, garbage, firewood sales, cleaning up campsites, collecting fees, etc. = that is something we can do and will pay enough along with his SS he will collect this fall when he turns 62. Course, when he qualifies for SSDI we will go there since it will be more.
Right now it is just one step at a time since we are still very early in whatever this turns out to be.
Hello everyone! I am SO GLAD to have found this website! It has been so very helpful. My husband is 50 and lost his job of 28 years a little over a year ago and just lost another job he got right after he lost his long-time one and that is when I noticed something isn't right. We now have no insurance and he is unemployed (I'm not making much at all either) and we are heading down the road of losing everything to get a diagnosis/help. He is in major denial. Helpful to read the articles on EOAD and how hard it is to get a diagnosis, although I think I should hold off until we get some insurance, huh? What do you suggest?
If you can get a diagnosis your husband can apply for Social Security Disability if he has paid into Social Security during his working time. I see he is young--but is he a veteran? If so, you might be able to get health benefits through the VA. My husband is 59 and has FTD. He was recently approved for Social Security Disability.
Hi Marise & Welcome, I am so sorry you have a need to join this family, however, I am sure you will find everyone kind, helpful & non-judgemental. I agree with deb112958 getting a diagnoses could be helpful with getting Social Security Disability. My husband is 59 and has FTD. He was approved on the first try almost 2 years ago. Again, Welcome. Hugs, Kadee
Lots of new faces in the last week or so. Welcome to Donnaapril, One Day at a Time, egd, Bright star, Phranque and Joan 1012. Apologies to anyone I missed. This is a great place to come for information, support, venting, recipes, jokes and more. We hold each other up and help each other hang on. Come back often.
Thanks for making this available. 72 years old, married 3 years, My husband had a stroke on our honeymoon and 2 years ago was diagnosed with vascular dementia and some AD. 46 times now I've watched him turn white, get clammy cold, sweaty, and lose consciousness. Last time, 3 weeks ago, he was out for eight minutes and his blood pressure was 68/40 when the ambulance arrived. Needless to say, each time takes a little more of my dear one's brain. Fortunately I was able to get him into a nursing home very close to home so I can visit him every day and bring him home some times for lunch. But this horrible business is taking its toll on both of us. Like the others say, everyone keeps telling me how good he looks, which is true, but this morning he didn't even know his birthdate. and the other day was nothing but obnoxious, mean, uncaring. How are they able to put on such a good show for others? His own kids don't believe there is anything wrong with him except he can't walk Anyway , as if you needed it, you've now got another spouse to uphold. Thanks for caring. God bless, Me-o-my
Me-o-my, what a sad story you have to share. You really never had a married life together. You didn't mention his age,but I would imagine he is older. I would hope you could ask his doctor to share with his son the problems he has encountered and his prognosis. At least you are not having to take care of him by yourself at home. I'm so sorry. You must know we are here when you need to talk. We all get a little silly sometime, but that does not mean we are not still walking the same path you are. God bless you!...too!!!
Welcome, Me-o-my, your story really is sad. To watch him pass out 46 times, it's amazing that he has lived through that and also amazing that you are still sane. We'll try to help in any way we can. This is really a loving family here.
Welcome to all the newbies! Sorry I havent posted in awhile. I had to have a pacemaker in Jan and it has thrown things all off kilter. I am SO far behind in everything since then. I am sorry for the reason you newbies are having to be here, but so thankful we have a wonderful sharing group that understands what you are going through. My hubby is 57 and had AD for 7 yrs. I was SO amazed at how many of us were in our 50s! In general most I meet around are older and everyone stresses "he's so young". We are glad to have you among us as we all jounrey on...
Welcome to Newbies I have missed and some of the older ones I have missed. I am thrilled to see all the recent "new names" posting and well as those of us who have been here for a long time. This is a great site to visit every day.