Slowy getting back to normal here. Finally, a new blog. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. If you have mastered the lesson I have not learned, I would like to hear how you did it. If you are struggling as I am, please tell us about it.
I understand this blog completely. I could have written it. I say I have excepted that he cannot help the things he does but any new developement and I am fighting excepting it. I have stopped praying for patience because I am ashamed of admitting my failures. I get started fussing and cannot seem to stop sometimes and then I feel so bad. He does not remember it but I do. I will continue to try to do better and forgive myself when I fail.
No Joan, I have not mastered the lesson! I haven't mastered the new stuff either. A few days ago it was I was hiding money and cheating him. Posted under "I am furious". Today it was lets sell this house and you take half and I'll take half. I asked him where he would live and he said he would get a place somewhere. I asked him who would take care of him and he said he could take care of himself. I told him he couldn't because he can't drive so he can't get to doctor's appointments, to the store for food, he can't cook and he can't do laundry. He agreed to all of them!!! I don't know why after over 45 years he is suddenly concerned about money. I just hope he doesn't make this his new paranoia because I will eventually blow up.
I think I have almost mastered it. I have learned to not respond to him immediately and sometimes he forgets he just asked me something for the 100th time. But...when he does keep it up, I do just answer as if it's the first time. I think this was the hardest lesson for me to learn because he will ask me the same thing within 1 minute, then another minute. Patience, patience, patience. It's so hard and not pleasant by a long shot. I also try not to say to him, DON'T YOU REMEMBER? When I do 'forget' and say that, he looks so hurt and frustrated, I feel so bad.
Don't you think that we all have different strengths and weaknesses in this journey. I haven't had trouble with answering the same question for years now. I am one of those who just repeats the answer patiently for the 100th time. BUT, there are issues which cause me to be mean and say things like," can't you even blow your nose?" or " how can you not know your nose is running?" These are the types of things that I struggle to be patient about. Then I hate myself for being mean.
Well, Jean 21, get ready to blow up because money gets to be a paranoia. Not an every day occurrence around here but when it hits, it isn't easily forgotten. What is so hard for me to accept is that my dh was always a very generous person and never dwelt on money. This is a real departure. I wonder if it goes back to his childhood when they were a large family without much during the Great Depression. I hold my breath every time we go driving past the bank because I am afraid it will bring on a tirade.
This disease really forces us to be patient. We can't help but lose it once in a while. Sort of reinforces our efforts to do better.
Oh Joan, you said exactly the same phrase I said in a post a few months ago. Head, yes, heart, no. I am getting better about answering the questions. My issue now is him being clingy & loving & me not being able to respond with true loving emotion. He keeps telling me he loves me & he is glad that we are still husband & wife (& he tells me numerous times a day) but most of the time when I tell him I love him I say it without the loving emotion I should have in my voice. I think it is the emotional divorce we talk about here. I don’t want to do it, but I can’t help it. For the past few weeks I can see him in a decline & it is breaking my heart. Jean21, the money thing happened with us too & I thought I would go crazy, but as with all other things it ran it's course & now he doesn't even ask for money anymore.
We’re all human, and it seems to me in order to deal kindly with our cognitively impaired spouses we have to do something super-human - learn to turn off our instincts and reflexes. Our reflexive response when anyone is saying or doing something wrong is to correct the other person. If it is a repeated offense we may even “snap” at the other person. But with a cognitively impaired spouse we are supposed to blame it on the disease and ignore our reflexive reaction. Instead we are told to ignore, distract, pretend to agree, patiently repeat things over and over, etc.
That’s hard to do. And even harder to get into the habit of doing, i.e, re-wiring our own reflexes.
I had a heartfelt discussion with my 16 year old son the other night and admitted that what worries me most is not what may be in store for his father – further cognitive declines, losing his license, losing his job, etc. – what worries me most is my ability to treat him kindly. I’m worried that I am not going to be good at this.
I thank God for this site, where so many of you provide such wonderful role models for patience under the most trying of circumstances, grace under fire, and unconditional love –qualities I pray I can learn from the rest of you.
At some point in this hateful journey, we share all of the above.. For over a week now, DH, has pointely requested that I drive him to Meijers for "something very important". so Sunday , we found ourselves one block from the store.. I ask him of he wanted stop in....No, he said, he had to get home.. I pushed the subject, He got fighting mad and I dropped it and drove us home.. Then Wednesday, I said lets go to Meijers.... Yes, he said, but when we parked the car.. he didn't want to go in.. Well, the temp. that day outside the car was 102.. imagine me leaving this man in a hot car.. so we drove home...Then today I said, as soon as I get home, we'll run to Meijers.. he looked at his watch and said that I didn't come home on time so he didn't want to go. I suggested lunch out , pick up his prescriptions and then ,Meijers... No, he said, if he couldn't go when he wanted to go, he would NOT go... I went on out and got the prescriptions and came right back... I am wondering if any of you have this spiteful side coming out...DH takes exception to everything, bar none... I say Good Morning, He will say BUT it won't last.. I bend over backwards to make him happy and he resists 100%... I fix his favorite food and he will say,, that was good, but you put too much on my plate...To think about it, he has never in his entire life given me an outright compliment.. always"but". Even music on the car radio doesn't suit.. rather than change the channel or turning the darn thing off. he will grumble "How long will that piece last or don't they play nicer music... I try but, can't see me ever pleasing me. I pray each day, not to let him get under my skin... I gotta tell you, at the end of the day, we have done IT ALL... Patience really gets to him.. He seems to enjoy seeing me upset and when I do master the art of keeping my mouth shut, that irritates him even more.. The subject of money... I try to never bring that subject up...WW3 starts and never ends.. Lord, have mercy, what to do??
MY DH NEVER bothered about money. I have taken care of all our finances for over 45 years so I don't have any idea why it is now being brought up. Yes, I know it's the disease but that doesn't mean I have to like it. In fact I am sick to death of this disease and the garbage he come up with.
Joan, I think that when I had to actually accept the fact that he wasn't unwilling, just really UNABLE to say, do, act, etc. in normal ways that I began to realize that I was losing him. That's just so hard to take that it was easier for me to kid myself into buying into unwillingness. As we grieve each stage we get to the point where the grief isn't, as his daughter said, quite so raw. I think it's made us tougher in terms of dealing with the late stages yet to come.
Having been at this awhile, it seemed to have become instinctive--whenever he says or does something, DO NOT react--RESPOND.
And then he put OT our dog out, and when he brought him back in told me, "I brought Chantey in." Without missing a beat, I answerd, "I hope not. Chantey's dead." Upset him terribly. Chantey was the Dachshund we had from June 1984 until November 1999. He's buried in the sideyard. I felt awful. It was like new news to DH. I have worked harder at Responding since then, but still occassionally slip up. My latest was an under-my-breath, "Why do you keep doing this?" To which I immediately answered myself with a small forehead smack, "Because his brain is broken, Sherlock." I really think we can learn to respond, not react, most of the time, but will always slip up once in a while. It's called being human.
It's not because we haven't grasped or accepted our spouse's limitations, it's that we long to tell SOMEONE, (anyone,) how frustrating this job can be and the ill person is the only one there to say it to. So the urge/need to express our frustration to someone trumps the nice, therapeutic spousal caregiver.
I find myself in exactly the same situation as you. I know he has short term memory but yet I still say "I already answered that". It is so frustrating to keep repeating 20 times a day on the same thing. I just get so exhausted. I was always a very patient person but this disease has taken all my patients and everything else. We just recently got into the mood swings and now I feel like a tennis ball bouncing back and forth not knowing what mood he is in. We got him some meds it has helped a little but my life seems so out of control. I hate it. I feel so lost and alone.
One of the reasons I write these blogs is to let all of us know that we are NOT alone. We all share so many of the same emotions - we can't change the disease, but we can gather strength from knowing we do not fight the battle alone.
I believe I've finally accepted what has happened to my husband and that's why MOST of the time I patiently answer the same question over and over and over. I must admit that at the end of the day I find my stomach knotting up, but I can answer the same question yet again and not let him see that it might be bothering me. I'm positive that part of the reason I can do it is because of this site, Joan. I've learned so much by being here and reading what others are going through, especially those like carosi who've been doing it for so long that her answers to questions we have make so much sense.
The paranoia, though, is different. We don't go through that as much as we did a couple of years ago but every so often it starts up again. That is when my patience suffers. I'm so afraid of the paranoia. I don't know how to handle that without trying to explain why he's wrong and that only makes it worse. I'm grateful it has lessened.
I have learned to lie, something that is not in my nature. I HATE lying. I find myself feeling terribly guilty when I know I have to lie in order to keep the peace. Knowing that I'm going to have to go behind his back to do something makes me literally get sick. I can't sleep. I lie in bed the night before or after the lie thinking about it over and over again. This is something I know won't get easier for me.
But, when he asks those same questions over and over, I can cope with it. I know he's not the man I married. Joan, I know that's the hardest thing for most of you to accept. But I think I have. I know he can't help it. I don't yearn for the man I had before this disease. That's over, and I have come to terms with it. I think.
Joan, another great blog, I have missed reading them! I am glad you are feeling well enough to post :)
For me personally I believe the reason I still said things like "don't you remember" or " you just asked that!" long past the time when I understood completely he could not help it and it was futile for me to say such remarks, was because though I had indeed accepted it, I wasn't yet ready to deal with it. Not the same as denial because I DID know that what I was doing was wrong and pointless, but I couldn't seem to stop myself from doing it. I in no way shape or form was trying to hurt Lynn or make him feel bad. I think it is more I was trying to hold on to my sanity, I was trying to hold onto who we were before...and I also think it was just plain old frustration! NOT at Lynn, but at how our lives were changing.
And I think it is very normal for everyone to go through this. It is our nature to fight for survival. When we see someone we love slowly being destroyed it is natural to try to stop it or at least rage against it. I think, at least for me, though I did have acceptance, it wasn't until I was resigned to our fate that the "fight" instinct was replaced by compassion and kind understanding. With that came the patience God gave a saint.
I do also agree with Jang, though we all are walking the same road, there are many many paths. What is hard for one, might be easier for another. I have heard from spouses who say placing their spouse wasn't difficult for them at all. And I think, OMG!! HOW can that be!? It destroyed me...... but we are all different, and we ourselves go through "stages" in this damn disease; not the same as our spouses but stages and changes none the less.
I think everyone needs to cut themselves some SERIOUS slack!!! We are in an impossible situation doing the best we can in any given moment.
I sometimes have a tendancy to just take over and I think it comes to us CG's naturally as we become responsible for EVERYTHING. Not only was I 'big chief in charge' but much of that came because I knew DH could not do anything, altho he was still in my life and because he did not respond normally, I didn't give him credit for still being there. I'd say and do whatever I felt like and one day, talking to DH and my son, not really paying attention to my words and their impact on DH, our son said, 'You know Mom, he can still understand you.' Click!
Another time we were at a large event and everyone was being interviewed and filmed. A few weeks later, when I saw the video, I was astonished to see how I did all the talking for both of us, just went on and on, again, as if he wasn't there. Click!
These were very teachable moments and I changed my ways immediately. The truth is, we fall into these traps because we don't fully understand the brain loss and because we simply go on pretty much as we always had in our marriage--habit and routine.
I feel sad about much of what I did, but I am also pleased and proud to tell you that I long ago forgave myself for these missteps. I did not have the knowledge, experience and understanding then that I would have much later. How can we? We are thrust into a madhouse that we are determined to fight every minute to retain the life we've built with out LO--until we realize that is not possible. But more than these mistakes, like most of you, I took care of DH, protected him, loved him, never abandoned him, so if I blame myself for missteps, I'll take the accolades I've earned taking care of him. You'll see, it'll come.
I react instead of respond when I am tired....which is more often these days....even with 4 days of respite. I think it is because he seems to delight in doing things that aggravate. I feel I am having less patience with him these last few months. I am now looking into funding possibilities for a Memory Support facility as I don't think I am helping him in my reactions.
I so learned a lesson yesterday. First, I don't want to brag, but I feel good about myself that I have been able to take over a lot of things that my dh always did before. I am doing what I think is a man's job. For instance, I learned how to hook up a truck to a long trailer which was filled with 3,000 + pounds of scrap that needed to be taken to the scrap yard. Dh had to close his business closed so I am cleaning up the garage. I was a nervous wreck hauling this heavy load but I made it to the scales for the scrap to be weighed. I hadn't learned to back up the trailer yet so I jumped out of the drivers seat and asked dh to back it up to the the crusher. He lost his license but I figured he could at least help me out here because he was a pro at backing the trailer up before. To my surprise, dh couldn't figure out how to do it. The trailer was going every which way. He nearly backed it over the hill. I jumped out and started yelling out directions for him, but he just couldn't get it. It seemed like an eternity until he got the trailer straightened out. I later learned that the men at the scrap yard felt sorry for the man whose wife kept yelling at him. Lesson learned - Don't assume that dh can still do what he used to do so well and never yell at him even when the nerves get the best of you. Today I learned to back up a trailer!
my goodness Mag. that is something of a real accomplishment.! good for you, where theres a will theres a way... and yes we tend to think our spouses are able to do some things we knew they did well in another life, but unfortunately they can prove us wrong in an instant- i am glad nothing bad happened while he was behind the wheel. divvi
You know, I know that I should not argue with dh, especially about his drinking, and most of the time I do not. However, there are times when the "real" me finds her way out of the prison I am now living in and responds as I normally would to abusive behavior - I fight back. I know, I know, what a total waste of time and energy. I am just so afraid that when this nightmare is finally over, the person who I was will also be gone with him, I won't remember the real me because I've been cowering for so long.
I am getting better at 'not reacting'--I'm by no means perfect, but much better than before. There are two questions I have about my growing "skills" at non-reactivity. What I worry about is that my skills at 'non-reactivity' have dulled my emotions. I sometimes feel there is a generalization occurring in me--'non-reacting' becomes the default mode, even in other situations. I have always valued my ability to know and express my emotions--I believe my being in touch with my feelings and being able to be expressive about them has kept me healthy physically and emotionally. I wonder if I am acquiring habits that, however necessary in this context, might alter me for all time, and not in a good way.... I also know that at times I need to retreat--disengage from him for awhile in order NOT to be reactive to some hurtful thing he has done or said, as staying engaged under these circumstances would bring about reactivity that would do neither of us any good. I have old 'rules' in my head, however, that my withdrawing for awhile is abandoning him, passive aggression, 'bad caregiving', etc. I wonder if any of you have struggled with either of these issues, or perhaps both, and how you have come to terms with them.
P.S. I think there is a painful dance between head and heart that doesn't stop unless we are sleeping. (And I don't know about you, but my dreams suggest it doesn't even stop then!) For me, "I know it in my head but haven't accepted it in my heart" has been a huge factor in my attempts to learn to live with my husband's dementia. And I don't think my experience is unique. For us to fully accept that our LO has truly gone away in significant and formerly necessary aspects is for us to have to experience all the grief of death--yet with the added complication that a person who looks just like our LO and shares many years of history with us is STILL THERE in other ways, just not very appealing ones. When a spouse or partner dies, I imagine, the finality of it helps us to be able to move ahead, even if it takes a respectable while. In living with dementia, at least for me, I think my anger at his not remembering, losing things, confusion, etc. comes from a lack of 'heart acceptance' that he is truly 'gone'. What happens instead is an unconscious trick of mind that says "he hasn't gone away. He is still here and COULD do better, he is just refusing to, or can do it with reminders, or some kind of intervention I can devise. And then he will come back as he was." It is the best of two evils: the fact that he is not cooperating is infuriating, because I need him back. But his refusing to do better is somehow easier to take because I can then proceed as if he isn't gone--just being impossible. The drop-by-drop loss, the roller coaster rides of better functioning/worse functioning and at the same time having absolutely no idea how long things will take and what will happen next: these are all so very hard to bear.
tryingforpatience--welcome to Joan's place. What you described in your second post is the true challenge of dementia caregiving. The "limbo" state where the former LO is gone, a new person is in his/her place, and we are forced to deal with it. This is where you will learn how.
Welcome to my website, which I started in 2007, because I needed a place that dealt with my unique issues as a spouse of an Alzheimer patient. It is now a place of comfort for spouses/partners who are trying to cope with the Alzheimer's/dementia of their husband/wife/partner. The issues we face in dealing with a spouse/partner with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse/partner.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". If it applies to you and your spouse, there are 4 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD- now called YOUNG onset). There is a great section on informative videos, and another excellent resource - Early Onset Dementia - A Practical Guide. You can go to the top of this page, click on "search", and type in EOAD, making sure the "topic" circle is filled in. All of the EOAD discussions will come up - there are about a dozen of them.
Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. There is a "search" feature on the home page that allows you to look up different topics that may have been explored in a previous blog. Log onto the home page daily for new blogs; news updates; important information.
Sounds like you have come to some sort acceptance of this horrible disease. You certainly seem to have more wisdom than I had at the beginning. I couldn't believe my husband couldn't do math anymore after a lifetime of engineering. Bill paying was always my job but he always kept track of our investments and balance in checkbook. When the day arrived that he didn't ask or show interest in our finances, it was very hard for me to accept that part of him was gone. Then he lost interest in the car, didn't pay attention to the gas guage, just whether or not it was clean. Until now there have been no anger or abuse issues but after reading what the rest of this family posts, I know it can happen and the doctor tells me he can prescribe something. I just try to keep dh's comfort level high and when fiblets are necessary, out they come. Life is too short to argue. Doesn't do any good anyway. Welcome to the group.
First off I need to admit that I've had my own problems with this; but, I am further along than either Joan or many others here.
It becomes clearer though when we think of a cancer spouse who not only has trouble accepting that his/her spouse has cancer; but, actively behaves that denial. Saying things like we can't be sure it's terminal cancer when the diagnosis has already been confirmed or even talking to others as though it's an illness when they already know the truth.
If we were seeing that in a cancer spouse where we knew as well as the spouse did that it was cancer and it was terminal - we would fear for their mental stability.
Even in Parkinson's where we knew it was fatal and we saw over the months and years each sign of further physical deterioration - we can guess whether those spouses have the same difficulties with denial of what they are seeing. I don't know but I would guess the denial might be less stark.
In dementia though it is the mind and AD almost always picks off many of the mental functions and the mental nuances and the mental associations first before becoming more apparent in the body. And that apparently is very difficult for spouses to accept without reinforcement. I don't mean early but I do mean once it's been diagnosed as AD where we behave as though it weren't true.
If our cancer example said they felt nausious one day, it's parallel behaviour if the spouse responds by arguing that it's just a cold or just a fever - NOT CANCER! That is an exact parallel with arguing with a diagnosed alzheimer's victim that they need to SNAP OUT OF IT!
I'm not suggesting spouses shouldn't have strong feelings and they have earned them. I am saying human beings don't deal well naturally with mental disorders and in the case of AD this is compounded by other considerations.
Even though our mind knows they will die and has some comprehension of what will happen we cannot take that in which is probably exactly the same as someone who has cancer and is told they will die within a few years if they're lucky or someone with who just finds out they have parkinsons. In all cases everything is almost perfectly normal on that day and it's only our minds that determine the extent to which we hypothetically understand.
One of the compounded considerations in AD is that there is no exact guideline on what to do about each specific thing we see. We are not told to expect nothing or expect everything and are left to ourselves to try to react reasonably to each thing we see (of which multiples can be going on in both directions simultaneously - they are speaking worse but are more interested etc.), so we try to encourage them not to give up and we insist they can do a certain thing and we are shocked that they just did this other thing and we are determined that they fight and so on. We literally give up a piece at time when we see they can no longer do such and such but also are not ready to give up this other thing and push them to keep doing stairs or use the phone.
I believe Parkinson's spouses are close cousins. They don't have the unseen enemy of what is really going on inside the head of their spouse; but, they fight the same fights as a piece of the nervous system goes and their Parkinson's spouse can no longer wipe, or walk, or drive, or eat or control their speech and so on.
I was told early that the battle gets easier as the disease becomes more pronounced. What they didn't say was that part of that would be that we would be so numb inside and so beaten up that there aren't any raw nerves left to be gotten at easily. They were right though. Now that my wife is more homo erectus than female perfectus and our battles are staggering up stairs and letting her eat with her fingers - I'm not in denial anymore which was that I reacted to the things I knew were coming as though they weren't and am for a while now struggling on the only course actually open to me.
Accept that I am alone and while I'm helping her through this slow and painful death - learn to open to my real life now. My wife will probably be in a nursing home for some years. If I stare at the floor during that time or even now - then that is just more denial. The truth is this is my life now. And without weighing that down with other people - I should live the life I've been given.
It gets easier. We are more exhausted and stretched thinner and still have trouble with the battles. But it's not as easy to hit a nerve anymore. And yes, it's not easy to come back from either. Chatty butterfly to alzheimers spouse and back to chatty butterfly happens once a blue moon.
Welcome Trying, You said it so well. I have these conversations with myself frequently. I know a reason I am so much better at not reacting these days is that I have become numb in many ways, not only to his AD behavior but to family and friends. Four years of some extreme hurt and betrayal so much of which, particularly from family, was shocking to me, has left me feeling like I have Post Traumatic Stress Syndrome. The first 2, 3 years I would still sob and sob violently screaming at the pain and frustration and grief, usually when alone in the car or when alone in the house. Now I still have many moments when I feel grief and sadness, but there hasn't been any sobbing lately. I just find myself silently crying, tears flowing while I continue doing what I need to, driving us across country or to errands, or going about daily business of living.
I can't remember the song, just the lyrics, "but she's not there," Beatles I think. That's how I feel. I can still pull out part of my old fun persona but only for a short time. It exhausts me. Wolf said something about being numb and beaten up without as many raw nerves anymore. YES YES YES I used to tell a friend who asked how I was that I felt "beaten up." But thank god I am where I am. It is how I am surviving. I have reached acceptance that my husband, as I knew him, is gone. Gone. But I do love deeply the person he is now. He's annoying, spoiled rotten, self centered, but sometimes funny as hell, loves good food and will go to most any restauranti want and I will miss him. And it is only through trying to live in the moment that I am surviving because I am not ready to lose the person who he is now.
Welcome to the family :) I don't have much to add that the wonderful folks here haven't already said. We have all been there, and we do understand. I really liked what you wrote, "I think there is a painful dance between head and heart...." how true!!! I too "retreated" I think it is important to be alone to catch your breath and your thoughts, if even for only a few moments. I called it my three R's - retreat, regroup and reload.
Well let me tell you about the way she looked The way she acted The colour of her hair Her voice was soft and cool Her eyes were clear and bright But she's not there.
http://www.youtube.com/watch?v=jMKkCBOM7_4
We must all remember and to the main point of the thread and Joan's blog - we will make mistakes. I've made horrible mistakes that I am deeply ashamed of.
We love them and lived our lives together both good and bad, we grew up together through the years and to easily accept this or not be horrified seeing what it does to us - is just not realistic.
If they could understand how they have behaved and what they have said they would be utterly devastated. They would redefine what shame is because when they were able to be their normal selves they would never have dreamed of behaving so.
And the most serious point. If they could understand what we have done and are doing for them they would in an instant not think about any of the times we struggled with it or were mean to them because there is plenty on their part that is the same - they would be overcome literally by seeing what we have done for them.
It is right here that I see one of the main points of damage to caregivers. Almost no one discusses the feelings that such huge sacrifices made so selflessly for so long creates in the soul. I stand almost alone pointing out it is a noble act. It is near the pinnacle of sacrifices possible.
But human beings are much better at suffering years of hardship than having one thought of how noble they themselves are acting. Nature of reality. Which is that when it comes to seeing ourselves we distort reality to fit into our nature. And in most people thats an overflow of negative signs. As the saying goes "good things last 5 minutes, bad things last a thousand years".
It's too bad virtually all of us are wired this way. And you can stop with the denial while you read right now or put out there in public right now that you treat yourself the way you treat those around you; that you forgive yourself the way you forgive those around you. You don't.
Many thanks to all of you for your welcome and for your responses to me. I look forward to more sharing with all of you. I have been a 'lurker' for a little while now, and so I am aware that this forum is a reinforcer for all of us--an acknowledgement of our struggle, a sanity-check for our feelings and actions, a place to try out ideas about ways to adapt, and a place to share what it is like to be the caregiver of a "disappearing" spouse. I welcome you all into my world, as well!
Most of us that have spouses in later stages have been through what you are going through. It is not easy, and there is not a simple way to accept what is going on. It just hurts so bad to see your life crumble before your very eyes. For me...most of the time, I think I have accepted my DH illness...then some little things happens and I cry my heart out.
When my DH was still at home and in his angry stage (that lasted forever) I never knew when he was going to explode. A simple statement like..."do you want a cup of coffee, Honey?" could set him off..."I am perfectly capable of getting my own coffee...do you think I am an idiot?" and off he would go, yelling and screaming. So sometimes no matter how careful you are...they will still react with anger. That was so hard.