It was 14 years from the very first signs of early AD (in 2000) until the time Larry died, so from the very first I was dealing with a few things at home that outsiders did not see or did not want to hear about. The beginnings of the isolation, worry, and fatigue started very early, although they were very mild at first...it was a long, slow, downward spiral. First of all, I would try to maximize all the good stuff that you can. Whatever happiness is in your relationship, try to take advantage of it while you still can. Try to be patient and kind with him...it is good for him, of course, but it will also be good for you.

Find personal interests that you can do while still being available to him as need be. I was able to keep my job for the first twelve years, and of course that was satisfying in many ways. I also became far more involved in my church choir than I normally would have. I could still get out to choir practice and church (5 minutes from our house), and the music was very soul-sustaining. When he started to become worried and unhappy that I was going out one evening a week and on Sunday without him, I gave up choir, but started working on my online Masters degree in Public Administration. I was a public health nurse at the time, so while I didn't really "need" the degree, it was interesting and relevant...wasn't ever going to hurt me. (He never minded me going out to work all day--demented or not, he understood about that paycheck. lol) The degree made sense professionally, but it was mostly to keep my mind active, keep me sane, and give me a little more socialization through the online teamwork we students had to do. He didn't mind me doing it, as he had a huge respect for education, and of course, I was right there at home with him. My bricks-and-mortar college was five minutes from my office, so even though I did the degree totally online, I could run over to school on my lunch hour to go to the bookstore or talk to a prof in person. While working on the degree, I realized that I wrote better than most of my classmates, and that I wanted to pursue writing...another thing I could do at home while watching him...and that kept my mind active. I found that as he got worse, I just could not pull a novel together...which was what I wanted to do. My efforts just floundered, and my beautiful, professionally-designed blog was just sitting there mostly empty. But I did start writing book reviews for a historical novels' journal, and I've been doing that and getting published internationally for four years or so. (Volunteer work, no pay except the satisfaction of having my blab published.) Even with my nursing background, and with all these struggles to maintain some personhood, the disease process has been my worst nightmare, and I've barely survived it physically or emotionally.

So try to do something that nurtures your brain and soul...whatever that may be for you. I know that Joan has been very creative in her knitting--my DD has bought some of her stuff, and just loves it. For me it's writing and music. The Internet can be a godsend in terms of keeping your mind alive and finding socialization and support. (This website is going to be a Must!) I think pets are good, too, although I don't have any at the moment. Try to keep in as good of physical shape as you can manage...that's a tough one. And make sure your financial and estate planning ducks are in a row. There is much information on this website about that--basically, you need to get control of the money before your husband becomes too impaired to sign off to you. And start planning now for the different levels of care you're going to need...what will make the most sense for you...can you get by with some aide time? With a day program? Will residential care be the better fit? Can you afford it? Where and when will he go? Again, people on this site will be founts of information for you. ((((((Hugs))))))

Lynn12345, I don't think there is a person on these message boards that doesn't want their life back so you are definitely not alone in those thoughts... One of the most frustrating things about this disease is not knowing any kind of timeline on it... Some spouses decline very rapidly and others decline very slowly and unfortunately there isn't any way to know which category your spouse falls into... Get control of finances and make sure you put yourself In a position to make decisions down the road... For me personally I wasn't interested in joining support groups and talking with others in similar situations... Just not my thing I guess... But I stumbled upon this website and spent copious amounts of time reading through all the message boards from start to finish... It was a tremendous wealth of information, helpful strategies and a dose of humour which comes in very handy... Respite care is fantastic... Sometimes a short break away is enough to recharge batteries and get a better perspective... Try to realize that your spouses actions or words, while sometimes irritating or hurtful, are truly not him and he can't control the disease, it's hard to do but it helps... Try not to sweat the small stuff... I used to have an immaculate home and now my dust bunnies have names but I've learned to roll with the punches so to speak... I'm sure you will find many many words of wisdom on this site...

My two cents, Lynn – My husband was a big, strong guy, who handled everything, but when this disease began affecting him, it’s as if his foundation crumbled, leaving him afraid, not understanding what was happening to him (very scary!). Easy to say, but if you can always remember that he really needs you now, and his actions are not him, but the disease, it might help.
When he first went into LTC my big strong husband sobbed like a child, (not like him at all!), saying “if you’re going home I have to go with you” “we have to be together”, “why don’t you want to look after me anymore”, and so on. This is heartbreaking. I couldn’t keep him at home as Elizabeth and others have done and are doing, and the LTC staff were really good to him, so as things progress that’s something to look at. As Aunt B said, you will find the strength that you need.
As you have already noticed, other folks on this board have REALLY valuable advice to support you as you begin this journey. God bless.

Lynn, another two cents from me, and maybe it will be my last …

one thing I have learned from this board, and experience …
You say you are ‘taking care of the financial and legal issues as well as his medical appointments”…

My husband and I both worked, but because of old previous marriages we had separate financial accounts. We had no previous commitments. We had decided a long time ago that ‘whatever I have is yours, and whatever you have is mine”, but didn’t change things around. We made our Wills when he was beginning to fail. That’s when he declared to the lawyers that he wanted to make everything in both our names. Because of his insecurity, I said we would keep his accounts in his name, thinking that this would make him feel more secure, knowing that, no matter what happened, he had funds in his name. As time progressed, this didn’t matter to him anymore. He didn't even know what money was.

Money was never a motivator for me – I would be happy to have him with me, even if we lived only on our old age pensions. BUT, in the end, this was VERY costly.

Just something you should think through. I don’t regret making the decision I did, because it was for the right reason, but now I know it didn’t matter to him at all … and it cost a lot.

Paulc and Lynn,
My comments were, in no way, meant to be negative. Paul, I really respect your loyalty to your wife, especially with regard to your struggles in trying to protect your son. Somehow, perhaps it's the stress I feel I am under, I am coming across as negative. Don't mean it in that way. Just trying to contribute. Maybe I should back off for now.

Marg please don't back off. You have much to contribute. We all are on the same journey but each one is different. Our marriages are different, who handles finances and such are different. It is the accumulation of everyone experiences that help us to know we are not alone, others have walked it no matter what the differences/situations may be.

Thank you all for your support and recommendations. I have brought the Tegretol side effects to the attnetion of his gerontologist but she didn't think that was an issue due to the low dose that he takes. We have an appointment with a new Neurologist tomorrow and I will address the issue with him as well.

I am struggling with the thought that this will never end for us. When someone gets sick, you look for a cure. If they have a terminal illness, you enjoy the time left and then try to grieve and live your life as best you can. With this beastly disease, there is no cure, there is no end, you just enter this dark tunnel and never come out. Of course, I know that AD is a terminal disease, but somehow it seems different. Does this make any sense?

Latest issue is the computer for DH. He enjoys getting on line and visiting a few sites and looking things up. My frustration is that he has difficulty remembering pw's, remembering how to navigate, sometimes even how to sign on. I try to be patient but this is where my loss of patience kicks in after repeated demands that I help him out. I'm trying to keep the "neutral" voice but i'm not always successful and that's when the problems occur. He stalks off and tells me that he doesn't need me, etc. etc. You'd think that I'd learn how to handle this... after all I was a Spec Ed teacher... but when it's your DH, it's a whole different ballgame.

"When someone gets sick, you look for a cure. If they have a terminal illness, you enjoy the time left and then try to grieve and live your life as best you can. With this beastly disease, there is no cure, there is no end, you just enter this dark tunnel and never come out. Of course, I know that AD is a terminal disease, but somehow it seems different. Does this make any sense?"
This makes perfect sense to me. There is no cure, No end, No real helpful treatment options, and worse of all...No hope!. At least if our loved ones had been diagnosed with some kind of dreadful cancer or any other awful disease there would be some kind of treatment options available to have some hope in. And to me, worse of all...you have very little IF ANY help and support from friends and family. Because of the nature of the disease being in a demented, confused state tends to send everyone running the other way as fast as they can go. It is very isolating and lonely!!!

Lynn, I recall that stage so well with the constant questions and try as I might I could not always mask my irritation and anger. He always thought he did something wrong and could never understand when I tried to tell him it was not his fault. That stage for me was one of the most difficult because he was still at home and I was trying to work. One thing I did that worked for a year was take him to,the local senior center. This was before he got too bad. I would drop him off for lunch and he would watch the men play pool and they sort of watched him. I would pick him up a couple hours later but then they called and he had wandered in the women's rest room and did not know where he was so that was the end of that. The thing that helped me through this stage was to find someone to stay with him while I left or take him out and then pick him up. I had to have a break from it. Fortunately that did not last too long. I too felt that the disease would go on forever. I would read the posts of people who had dealt with it for 12 years sometimes more and I would become so depressed. If the person had a terminal illness such as cancer the doctor can sort of give a rough estimate of time left but with this disease it is all a big question make. That was one of the most difficult things for me.

Plus, people with cancer usually still have their memory and are still able to be part of conversations. with this horrible disease they can not.

I've been thinking about this thread for a while, and trying to come up with something that hasn't already been said. Everyone is really steering you straight, Lynn. I know it's hard to take over the money and property...to put everything in your own name...but you must do that. You can always donate it to charity or give it to his family later, if that's what you want to do. But you don't know what the disease is going to cost...and it can and probably will cost a lot...and you don't dare leave him with any ability to make any financial decisions. I know it feels "grabby", and many of us have wrestled with that. But it's not being "grabby", and you have to do it.

Margaret, I don't think your post was negative at all...it was spot on. Please don't stop posting--you made a very important point.

In trying to look back over the years and analyze what works in terms of spousal survival, I think the advice about just living for the day...taking it one day at a time...is the best thing to do. Do your long-term Alzheimers care planning, of course--that is crucial--but in terms of yourself and your own personal life, just enjoy the little moments and try to do whatever you can to keep yourself as happy and nurtured as possible. Try to stay physically fit...try to eat well...try to get a good night's sleep for as long as you can. You probably will end up isolated. (With respect to George, who is a treasure and a very unique person--many of us have found that family and friends run the other way.) So I would pursue some activities that you can do alone...that you enjoy...that are not too expensive. If you have any access to nature or the natural world, that will help a lot. Enjoy the moments--I know that for myself, both in NY and OH, the first few minutes of the day having a hot cup of coffee on the screened porch in the warmer months just got me started off on the right foot. Just being semi-outside, watching rabbits or squirrels, getting some fresh air, made a big difference. It doesn't sound like much, but it helped me a lot. Also reading, just light stuff for entertainment--a paperback can go anywhere with you...as can knitting or crocheting...or crossword books or word finds...things like that. You need to try to keep your stress levels down. And the Internet, of course...just browsing...online forums...perhaps take a course online...and the ISS space station, of course. : D

Laws are different in Canada and the U.S., but in the States, the recommendation is usually to just get the ill spouse's name off of everything. Period. The accounts, house, car, etc. should only be in the name of the well spouse. Others may chime in on this. And of course, current advice pertinent to your own state and county from a qualified attorney is always the way to go. But that's what makes it so hard. Larry and I always shared everything. To take his name off the house deed...to buy a new vehicle when we needed it, and put it in my name only...to transfer money to accounts with me as the sole owner...it made me feel terrible. But to prepare for the possibility of Medicaid further down the road...which we never had to resort to, thank goodness...it was the wise thing to do. Again, Canada is different.

Fortunately with Larry, he remained a TV watcher. over the declining years..had never crossed the digital divide and became computer literate. So for the most part, he got a lot of enjoyment (and stayed out of trouble), just relaxing in front of the TV for hours. He watched far more TV than in the days when he was sharp...but I didn't care...it kept him settled and content...seemed to make him feel secure and safe. He played it way too loud and flipped channels a lot, so I couldn't really sit in there with him. But TV was a great "babysitter" for a long time. Toward the end he couldn't work the remote anymore, and would drive me crazy having to help him with it...then he'd mess it up...then I fixed it...then he messed it up, etc. one million times until I was ready to scream. And of course he got mad at me about it--thought I was not setting the remote properly or some such thing.

Lynn, I don't know what I can add to what has already been said. I understand your feelings completely...I think probably most of us do. I was angry at first, after diagnosis (2010). I knew something was going on, but never dreamed of this! I tried for a long time to "make" him learn & understand, which I now know was fruitless...it just wasn't possible for him to learn. My kids told me, nicely, that I was trying to micromanage everything, which I guess I was. I've learned to back off (not that it's easy!). I've become more accepting, ever so slowly, of the way things are. Right now, he has finished breakfast (which is really at lunch time), taken his meds, brushed his teeth (after being told) & is scouring the kitchen for cookies! This now goes on every day...it drives me absolutely nuts, but I don't say anything to him. He seems to be declining at a little faster pace now. The pacing, the disremembering, the crankiness are so difficult to handle. Dan has always had this "thing" about being henpecked or babied, therefore, whenever I want to help him with something, in his eyes that's what I'm doing. I really insisted the other evening that we trim his fingernails. Well! He wasn't a pansy, he didn't need me to help him! As I brought his attention to fingernails that were becoming longer than a woman's nails, & called him Nancy, we proceeded. He really has never acknowledged his illness, seems oblivious to most things, can be very argumentative at times (I call it the mood du jour)...it is NOT a pleasant life right now.

Someone above (forget who) said something about collateral damage. What an apt description of how this affects us. They are the target of the disease, & we all suffer the collateral damage. And it does damage us, physically and/or emotionally, no doubt about it.

You are not alone in your feelings.

Sometimes antidepressants can help or maybe anxiety med that some take when needed. I stay up late (like 1am+) so I can sleep in since he goes to bed at 10 and sleeps (or pretends to) until 10 or later. My mind will run and keep me awake at night or like you wake up early and it starts in again. Now the mind running at night is often either dreaming of the future when he is gone, what it will be like single or how will I react when I find him dead. Morbid I know. Other times it is how to deal with things regarding the motorhome we live in. Right now it is winter and below freezing - I always have more to be concerned with like the water freezing or the sewer line freezing which was happening but yesterday I dumped hot salt water down the drain and the line is clear today.

As for the driving - many do continue early on. My husband drove until 2013 although the last year I did most of the car driving. He did the driving of the motorhome. His doctor said he could drive if he must as long as he was not alone. Was fine with him because he knew he could not find his way home. When we headed out from the workamping job to where we are now he wanted to drive. He made 15 minutes then pulled over saying he couldn't handle it. So my first time driving was the 630 miles to where we are now. When he surrender his license when it expired he told the woman he couldn't drive anymore cause he has Alzheimer's Disease. She was really great at praising him for giving it up and getting an ID card. He still thinks it is a drivers license now although he knows he can't drive. I was never so glad when he stopped because I would be exhausted telling him how to go turn by turn. I tried all the arguments like: if you get in an accident and they find out you have dementia they will say it is your fault whether it is or not; if you get in an accident even if not your fault they could sue us for everything we have; some insurance companies will not cover you if they find out you have dementia and did not tell them; etc. What finally worked was when I asked him: if you were in an accident would you be able to remember to tell the police what happened? He knew he couldn't. I am fortunate that unlike Joan and others he did not fight me on the driving issue.

For the past 2 months, I have felt so alone with this diagnosis. We have no children and a few family members who are several hrs away. Finding this web site has been like grabbing a life line and holding on. It has made a difference and I thank you all so very much. I wish you all were my next door neighbors but having this board is the next best thing.

Lynn, Even after my husband stopped driving, he would say things like, "I'll drive," or "Why don't you let me drive." I finessed the issue by saying something like, "Thanks, honey, Why don't I start out driving and you can take over later," or “I want to stop at a friend’s house on the way so I’ll drive first.” (Your reason does not have to make sense.) This kind of sidestepping of issues worked well for us. It avoided a lot of confrontations and allowed my husband to retain some dignity. One of the hardest things for people with dementia is that they feel that they are always screwing up and doing things wrong. I think it's hard for all of them but especially hard for men. The kindest thing we can do for them is to help them without being obvious about it or embarrassing them.

I agree with everything elizabeth wrote in the first paragraph of the second comment on this thread. I also agree that you should do whatever nice things you can for the both of you while you still can. The best money we ever spent was for the week-long trips to Ft. Meyers for several years, so we could see the Red Sox in spring training. He got enormous pleasure from those trips - especially since he didn’t know we really couldn’t afford them! - and I was thrilled to get a break from winter.

Mim, It’d got to be difficult helping Dan through these situations, since he has this thing about being henpecked or babied. In retrospect, do you think you could have walked him over to the men’s room by using an excuse? For example, by pretending you were doing something else: "Oh, I'm walking over that way now, why don't you use the restroom while I root through the rutabagas?" I'm not surprised your lecture on the way home fell on deaf ears - he is not going to change; he’s incapable of it.

This thought occurred to me the other night as I crawled into bed after a day of taking my husband to the doctor. I did not know where to put this comment and this seemed like a good place for it.

What I realized is that this Alzheimer's experience is the biggest challenge I have ever faced in my life. I think I see it that way mostly because of the number of years it is consuming. (For me, it has been 8½ years since diagnosis.) Although I have faced more dramatic and immediately threatening problems, none presented itself with the constant day-by-day demands on my attention, energy, and peace of mind. An example of this was the doctor's visit day. It was bitterly cold, there were no parking spaces in the LTC lot when I got there, I forgot my cell phone so I couldn't call the unit to say I was outside waiting for a spot and ask them to put my husband's coat and hat on him, etc. These are small things that happen to everyone, but over the course of years, constant little stresses like this wear you down.

A second factor is the specific nature of the mentally disability we are dealing with. Our spouses' irrationality, ignorance of reality, and lack of logical and intellectual ability is nightmarish. It forces us to live a double life: one in the real world, where we have to address many real-world problems; and one in crazy land, where we act and talk as though we share our spouses' bizarre beliefs. This is terribly draining.

I know the other big factor is my age. I faced most of my other challenges when I was more resilient physically and emotionally. I also had more opportunities available to me. All that helps one to take things in stride.

Those of you who have lived through abusive childhoods or marriages or who have brought up a disabled child might have faced bigger challenges that your spouse's dementia. But I have not.