I Just found this website, and finally feel like I am not alone in Alzworld. I live in Sebring Fl, and my wife has eoad at 55 yrs old. I think she is in stage 6. I welcome the opportunity to meet or to discuss any and all thoughts, and I can be reached at frankslawn@hotmail.com .
Welcome, frank. New Floridians are always joning our group. The Treasure Coast is having its Memory Walk this Saturday. Too many of our new members are having to cope with early onset dementia. This is a site where you can screan and yell and also learn an aweful lot.
Welcome Frank! sorry you are in the throws with wifes EOAD. there are many others here who are in the journey like you. you have lots to read here and from kind folks who understand and can give you solid hands on advice if you call for it. i would recommend you go back into your personal info file and remove your cell number through. its not a private forum but a public one, anyone in the world can read here so for your security please remove your phone but you can leave your email like some of theothers here to for contacts. if you find later a person you want to disclose your number too well thats different -i hope you find what you need here. many of us would be lost without this forum to keep us sane. Divvi/Tx
Welcome aboard, phranque -- sorry that you have to be here, but glad you found this site because you'll get lots of good information and support here. We're on the east coast, between Melbourne and Vero, and my wife is also Stage 6. My wife's younger sister lives in Lake Placid near you, and we have a nephew in Sebring.
Hi & Welcome phranque, I am sorry for your need to join our family, however, I am sure you will find everyone kind, helpful & non-judgemental. My husband is 58 years old with Frontal Temporal Dementia (FTD) his problems started at age 52.
Hi, Frank, let me add my welcome to the rest. As you've already discovered, everyone here is kind, helpful, non-judgmental ... and ever so slightly insane. (But we like it that way.) Bluedaze will want me to ask if you have a cat, this is a necessary piece of information for membership. Having a cat isn't necessary, just the info about whether you do. ;-)
Welcome Frank. I believe we've chatted on occassion on the Alzheimer's Association Chat Room. I have found this site to be very supportive and educational - people actually know what I'm going through as a spouse!
Welcome Frank! Your not alone, that's the wonderful thing about this forum. Unfortunately (that we even have to), there are so many of us finding help and understanding from eachother. As others have said there are several of us dealing with EOAD but you will find a wealth of info from everyone here. Rk
Hi Frank, sorry you have the need to be here but glad you found this site, I have been helped many times with the wonderful people here they offer advice and comfort and listen to you, give advice and sometimes just cry with you, so welcome I hope we can all be of comfort .
Welcome to our group. I know how you feel when you first find this website! RELIEF! The wonderful people on this site are in all stages of AD and can help. I learn so much by just reading current and old topics. You really need a good support group because AD last so long. Again Welcome...Ann
Welcome Frank! My husband turns 56 tomorrow. He doesn't have AD, but dementia caused by whole brain radiation. (same results.) I know what you mean about finally not feeling alone. I found this site & it has been a life saver for me. When I fall, this is my safety net. I am not alone anymore. You have found the most intelligent, compassionate group on this planet. There are experts on everything. Finance, medical, emotional, etc. You are no longer alone. If you need to vent, vent. If you are feeling down, post. We'll lift you up. We are here for you.
Welcome Frank! Glad you found this site, there are so many here, that know so much about this Sad Disease: ask anything you need help with, and you will Get Help. My heart goes out to you and all the other Young Ones that have come in contact with this disease. I feel like the Mother of you all, since I am 80 and DH is 87. I find a lot of comfort reading all these thereads....we all have so much in common
Welcome to my website. I am currently in Washington DC as a Florida delegate to the Alzheimer's Public Policy Forum, so this will have to be a shortened version of my usual welcome.
Please be sure to log onto the home page - www.thealzheimerspouse.com, and scroll through the resources on the left hand side.Click on the section on EOAD. We have many spouses here in your age bracket. Also, click on the previous blog section - there will be many to which you can relate.
Welcome! Come right in, sit right down, relax w/your beverage of choice and feel the friendship and empathy of those on this valuable site. As has been posted there are many folk knowledgeable in many fields who encourage,answer questions and fill a myriad of needs. Those of you dealing w/eoad have a more difficult road to hoe than some of us, but everyone's combassionate and non-judgmental and encouraging.
Frank: I want to add my welcome also. My wife has eoad- diagnosed about 8 mos ago, but, I didn't find this website until fairly recently. Wish I had found it earlier because I sure could have used it. I have a little bit of a different problem from what I see written a lot about. And that is that I resent this disease and everything about it. I could even resent my wife for all of the life changes that this has brought to us. But, I battle constantly to keep an optimistic outlook and be a pleasant person and a good caregiver. And, for the most part, I succeed.
These are wonderful people and they are helping me get thru this along with them.
2nd timearound, I think most of us here resent this disease and what it has done to all our lives. I am trying to respectfully and dilligently be a good caregiver also, but I still have resentment. It is a constant battle trying to be calm and upbeat. You are not alone. It sounds like you are doing a magnificent job with your wife. Take care....
2nd TimeAround...You said you believe you have a 'different problem' than we do. Maybe not as different as you think! We all try to be optimistic and positive, but we all feel like you do. This isn't fair to US, we didn't "sign on for this", and "why me" are but a few of the sentiments I have had and most of the others have had as well. There are nights when I don't even want to get into the same bed he's in. I remember his good soapy, light cologne, and manly smell, and the man in my bed doesn't even "smell" like the same person. He even smells like someone else.
Poor guy, he deserves so much more than me. It's not his fault. But ---it's not mine either!
Don't feel like you're alone. Trust me. You're not!
Welcome Franque! You will find peace and comfort here. Sorry you have to take this journey, but you are not alone. You are now 'one of us'. Welcome friend! ~Di
Frank, welcome to our family. I am sure you will find out that most (if not all) of us here resent this disease and everything that is causes to happen in our lives. I won't tell you that it gets easier, it won't. But I will say that our coping skills get better and with the help of everyone here, we get through it. One day at a time.
Thank You for your comments. I was beginning to think that I was the only one that was bothered with resentment and I was feeling like I wasn't a very good person. You have made me feel better about myself and I hope that I can be a better caregiver.
I'm sitting in the Family Room alone...rain is pelting down and making a lot of noise,thundering like crazy, we're in a tornado alert or watch or whatever it is called,.. and in the "old days", by now my husband would have calmly gone into the garage and retrieved the big flashlight that stays on the charger, and checked the windows and doors. I'd know that no matter what, he was here and it would be OK.
I've jumped out of my skin several times when the thunder sounds came without warning. He's asleep - has no idea what's happening. I wish someone was here with me. This is NOT one of my "favorite things". I've always been a little afraid of thunderstorms.
nancy b, you are getting our storm we had a while ago. about 6pm. it rolled thru here and my dogs are just now recovering. we had 3in hailballs and i have a glass atrium roof. tornado warning as well here- sounds like a train rolls over our roof with the hail -DH slept thru it as well- i hate thunderstorms and lightening too. sux to be alone - its my weakness too. scares me silly. divvi
I am embarrassed to be so afraid at this age. I think it's the noise, mostly. These times are the hardest for me. Gosh it's raining so hard, and it's pounding on the fireplace flue on the roof...and the sound comes down the chimney.. which makes it even louder.
Thunderstorms scare me too. My dh is in the other room and no help at all if the electric goes out or any other things happening but he is a presence. I know I will be more scared when I am alone. But you know, my cat is a "presence" and a comfort.
This has been the year from hell. We went through a bad hurricane, had no power for almost three weeks, DH has gotten worse by the month and the economy has gone kaput.. What else.
according to nostradamus its only going to get worse..:( and the mayans think the world will end on 12/21/2012. did i brighten your nite yet???????? hhaha..
well nancy i had to go thru this storm earlier here too. its horrible and the wind was 70mph in places. they were showing cars on the freeway that had their back windows blown out by hail as they were driving! ugh. super scary. i was indoors and my dogs feed off my nerves too. i often wonder what would happen if something happend and i need to move DH fast. he doesnt budge unless he wants too. divvi
DH is sleeping in the other room and he just did a big sneeze and my "heroic cat" was sleeping under my blanket and hopped out of bed scared to death. Guess she is looking for safer ground.
Frank and Dean, if you use the "search" button at the top of the page, enter "resent" and click on "comments" and then "search", you will pull up so many posts you'd have to spend days reading them.
Thank you for all who welcomed me. It takes a while to get used to finding subjects, and I am still learning how it works. I thought I had a fairly good understanding of this disease, since I had a front row seat when my wife took care of her mom with ad. But now that it is my turn, I am constantly questioning my own opinions, ideas and thoughts, and I can only say that this disease makes no logical sense, and that it is by far the most serious and devasting disease possible. I try to accept the fact that my wife is no longer my soulmate and intimate partner, but I want the old relationship back so much that I keep hoping it will be restored. In my postings, I never intend to offend anyone, and sometimes I don't even know my feelings and opinions any more. What I say sometimes may be interpreted differently than what I intended. I am not real good at expressing my thoughts, because they have been so confused with this disease. I am also trying to access what stage my wife is in, and we had previously thought 5 or 6. But with the help of many of you, I think she may only be a four. I hate to admit that I am trying to estimate how much longer this will last. I may be a bit fatalistic, but I am trying to assess how much longer we have with this disease.
Phranque, I think that was THE HARDEST thing for me to realize when I got here - that people deal with this for ten years and more. DIAGNOSED for that long, not just looking back and remembering strange things that long ago.
That, then that there's no making sense of it, no logical progression. My husband was early with a degree of incontinence, and with "confabulation" - explaining things in ways that make absolutely no sense, and with losing his ability to distinguish time, seasons, and me from his mother.
OTOH, he's still verbal, usually makes fairly good sense when he talks about mundane things, remembers and can verbalize the plots of Sherlock Holmes videos (we're going through them gradually from Netflix) and doesn't seem to be very disoriented when we drive around. And though he's been grumpy or noisy sometimes, he's never been really combative or aggressive.
None of us has the SLIGHTEST clue as to how long they can go on in the intermediate stages before they get to the last stage. Nor do the doctors.
Thank you so much for your kind comment. I somethimes think this disease crosses the lines between stage 6 and stage 3. Sometimes things seem more normal, and at other times so bizarrd. I realize that all people will not get all the symptoms all together, and there are times when one ability will seem worse for a while, then suddenly improve. It makes no sense to me, and I am still trying to find out where I really am. I have found doctor's advice very vague and impratical, although they are more than willing to "try" different medications. Phew, what a long trip this is, without a road map, and without even a road to follow......heck, I still can't see out the windshield, nor will the car run........
phranque, I think the emotional roller coaster ride associated with AD is one of the most difficult aspects for us caregivers. Any positive sign raises our hopes that things aren't so bad as we thought. In short order our hopes are dashed and we feel things are even worse than we thought. Some here have come close to having their LO die, then the spouse suddenly improves. You just never know where you are from one day to the next, and sometimes from one hour to the next. It's not surprising that you are having difficulty finding out where you really are, because you probably aren't in any one place long enough to decide. Hang in there, keep posting, we'll all get through this one way or another.
I want to welcome you here. I feel the same way you do. I want to so desparately get my hubby back that I feel guilty sometimes. My loving "husband" now curses at me, calls me every name in the book (why can they remember these swear words better than the word they are trying to think of?),is angry at me most of the time and my only survival is keeping hem medicated to reduce his anxiety. Joy. Joy. Joy. Now I react to these words like he doesn't even say them and I ignore much of his babling unless its directed at me. Then I always try to validate his effort. People wonder how I know what he wants. I tell them it's just like raising a 2 year old. Mom can always understand what they want even it is just jibberish to everyone else. I miss the hugs. Even when I hug him, he doesn't hug back. We always said " Ilove you" before bed. Now when he goes to bed, I say it and he doesn't respond. I finally had to put him on a list for a nursing home. That broke my heart. It was filling out the application that tore out my heart. After a few days of crying, I realized that this would be the best for him- which is what I promised him 7 years ago when he was diagnosed (age 53). He is 61, I'm 59. The best years of our life were yet to come!! HA!!HA!!HA!! This is a cruel joke. I keep saying this hoping that April Fools Day would be over- but it never ends. Now, I can't wait for the nursing home to call. I have severe arthritis in my hands and bathing, shaving, dressin, feeding, etc. are very difficult for me. I had hand surgery last JUly and it's been down hill ever since. Sorry I've been rambling on. It's been such a stress ful week. Dad(age 84) was hospitalized with a kidney stone that needed surgical removal. He is Moms caregiver(age 83) and she ended up in the hospital with a blood infection (diabetic with a wound that won't heal). DAd got out Wed only to have to get a port a cath (sp) inserted because he needs to start chemotherapy Monday! This constant care needed by my parents has gone on for a year and neither of them will consider a nursing home!! My sisters and I are exhausted and need this to end. Mom finally decided to go to short term rehab today so they could try to get her wound healed. I keep praying for God to keep giving me the strength to keep up.
Frank, that's why we all wait so long to get help. It's hard to assess the stages clearly. There are days when my DH is in stage 4 and days in stage 6. The symptoms overlap and vary but the decline is certain. That is why they call it the Long Goodbye. I miss my soulmate too. He used to advise me, make me laugh and make love to me. Now he makes me cry mostly, or angry. I often pray for the end to come sooner than later, I think we all do. Doctor's are just that, doctors. Two of them in the last week have told me to take care of myself and consider placement. When he's screaming in the middle of the night, I am sure and certain that it is the right thing to do. And then, in the morning, he remembers nothing, smiles and hugs me and tells me he loves me. But it really isn't him anymore. Too bad we are on opposite coasts, I think we both could use a "date" LOL.
If you scroll through the "previous blog" section on the home page of the website - www.thealzheimerspouse.com - you will find many, many blogs with a similar theme - I WANT MY HUSBAND BACK. I MISS MY HUSBAND. WHERE THE HELL IS MY HUSBAND? Unfortunately, as so many of our readers, my friends, my social workers, and my relatives keep telling me - He's not coming back. I have to learn to "let go", "detach", and deal with the person possessed by the disease. It's been about 5 years since this all started, and I'm trying. Every day I'm trying. It is not easy. But you are not alone - we all feel or have felt as you do at one point or another on this journey.
I agree with all of the above and a welcome to Phranque. See, I told you I couldn't keep up with newbies. I feel sorry for myself sometimes (a lot of times), hope for not a long drawn out decline then I read here and see so many of you others are having it so much worse than I am. I don't know how some of you handle it. The ups and downs of day to day behavior are enough to drive us all nuts. I had my Mom with us for several years and she passed almost a year ago. I truly don't know how I could handle 2 of them now, to say nothing of 3.
Every caregiver deserves a "gold medal" for services rendered and unappreciated. My dh has never told me he appreciates what I do for him,that he loves me. He is pretty much "self absorbed". BUT< he has never been violent or incontinent. So, I am trying to count my blessings. Disconnection does help me deal with this.
Those of you who are trying the disconnection might want to consider seperate sleeping arrangements to help the process.
Frank---welcome and please know that you are definitely not alone, even with the young age! My husband was diagnosed at 53 and will be 57 next week. And, as you have found out, the stages can be very confusing. My husband had no idea what Christmas was this year, yet I'm watching him cook his own frozen pizza in the oven right now (I did have to remind him to put the pizza on a pan, but he sets the oven AND timer himself!). He still showers and gets dressed himself, but this week stopped shaving! Since I am still working (with one daughter in high school at home and another in college), I have caregiver help during the day. Also, I'm in a support group through the local Alz. Assoc. just for spouses of early-onset (all spouses under 65) and there are about 10 of us---including 2 husbands like you. Between this website and my face-to-face support group, I am trying to keep sane, but some days are harder than others! Our doctors are wonderful, but remember, they don't go home every day to a spouse with this disease!!!! I get all my practical advice here and from my support group!!!! Actually, my caregivers have great advice too....it definitely takes a lot of help to "survive" this disease, and of course I'm talking about you, not your spouse. Disconnection helps also, in my support group we call it "crossing over" from being a spouse to a caregiver----about half of our group has done so but the others aren't quite there yet. Probabaly the same on this website
Thank you thank you...keep the stories coming...I am questioning everything I once knew for sure, every decision I make, and even what I think keeps changing constantly. I am still riding a dead horse, and I often tell myself that my whole world as I ever knew it or thought it should be is gone. I feel like I landed in a foreign country, where I do not know the language, the customs, or the geography, and that I am penniless, hungry and lost. Does anyone truly know what to do when eoad happens??? The one think I know is that whatever makes sense makes no sense.. and I too am learning all the new skills......Becoming a mother is a really tough challenge...by nature, I am not a caregiver (although I try hard and am getting better....but I am still missing the female side.....my approach seems to be interpreted by my wife as having sexual inuendos, altho this is not the case....wow what a ride......
phranque - we have no idea how long they will go on. Yes, there are averages -just averages. My FIL is still alive 24 years after diagnosis. He has been in the 'final' stages for years. Last we talked to the nursers he was still in his own little world walking the hallways with a smile on his face. To our surprise he will occasionally feed himself. He has been in this 'holding pattern' for about 8 years now. My fear is that my hb will progress from MCI to AD and linger on like his dad. That thought in itself is depression.
Charlotte, I can't imagine 24 years! Maybe that's not so unusual - I just have never neard of anyone going that long. Hopefully and prayerfully, your DH will not do the same.