Today's blog deals with the question - what has been the worst for you? I invite you to log onto the home page - www.thealzheimerspouse.com- read it, and post your comments here.
The blog was prompted, not only from a comment on the message boards yesterday, but from all of the newcomers to this disease that I have been meeting.
Reminder - If the blog doesn't show up, "refresh" the page.
I think the very beginning stages were the hardest for me because I did not understand what was happening, why he did not do the many tasks he use to do, why he did not remember. Nor did I know anything about Alzheimer's Disease.
Interesting that you would have this topic today. I suspected my husband had AD the past few years. Both his parents had it so I was suspicious. He was putting post it notes on the cupboards so he know where to put things. He was having trouble picking words to describe things. He repeated himself over and over and over again. There were other symptoms but I didn't recognize them as AD. I had been after him to schedule his annual checkup but he seemed to forget all the time. I scheduled it and went with him to the doctor. I told his physician what I suspected and did a through physical and then a referral to a neurologist. He also ordered a MRI and blood work. We picked up the MRI on our way to the neurologist and brought the results of his blood work with us. After the neurologists physical examination and questions, we looked at the MRI. It was like a mac truck hitting me. There were two black spots on my husbands temporal and frontal lobes of his brain. The words fom the neurologist were "you have significant frontal and temporal attrophy'. It was the most real event, next of having my daughter and seeing my grandkids being born, event that I have ever had in my life. Next the neurologist said that he suspected it was AD because of his history and proceeded to tell us about the disease. He said it was terminal and there were no cures. I lost it. That diagnosis came on July 2nd. My husband's neurologit doesn't believe in stages because everyone is different. However, I think his is between stages 4 and 5. Although it has been only a few months since he has had his diagnosis, I find myself grieving at the drop of a hat. At the same time, we have to think about the future and get our house in order. Not only do I have long term issues to address, I get to fight the insurance companies to pay for his insurance. I did this for Namenda when it was denied and I need to do it again for Aricept. I miss what we had don't even know what to expect yet. I try to get as much information as I can to be prepared but it doesn't make it any easier. Even now the tears are flowing. Thank God for the ability to talk to people online so you don't feel so alone and thank God for showers - they are great when you just want to dry and don't want anyone to know.
My husband is end stage-can feed himself but that's it. Has not known me for a very long time. I think the beginning of the disease was the toughest. He was still very functional but very nasty. Bill lost long term memory first and I was frustrated and clueless. Once I accepted that what was going on was no one's fault, there was no cure, and most important that dementia is a fatal disease my stress level dropped. I am doing the very best I can until the next shoe drops. Nora
We are still in the middle of this mess, but the beginning was the worst so far. The abrupt personality change from Mr. Congeniality to Mr. Nasty destroyed me. His golfing buddies asked him not to play anymore, he showed complete contempt for me and many of our long term friends....it was awful. It will show up still on occasion. Had I known of this forum, life would have made more sense..not hurt any less, but at least it would have been easier to understand.
I also add the first couple of yrs after diagnosis were the hardest for me. he was still with it enough to be cynical and in denial and thinking it was only depression and work burnout. the facts spoke differently and i could see daily the loss of function and would have to just digest it myself internally- plus the fact that i had no real knowledge of the disease or what to expect other than 'memory loss'. what a joke. if that was all there was to it it is workable. not! the unsurmountable loss of just everything, partner, lover, protector, companion, all at once was almost overbearing. and then i had no online forum to plead to for info and support. all alone and dealing with the monster one miserable day at a time, not knowing what horrible personality change awaits around the corner. the driving issues, oh my, were tremendous and having to take on every aspect of our lives both physical and personal without any help from family /friends to boot. thank goodness i am a survivor or i dont know where i'd beat t his point. i believe i finally came to terms with the onslaught of how the disease manifests itself and how i had no control over the destruction and devastation. i guess you have no alternative but to watch/wait and do the best you can inbetween. there is no point in fighting it tooth and nail. divvi
I am not sure this is the worst stage for me. Mac hasn't had angry outbursts out of the ordinary, he has never used a credit card (it's in my name) and has never cared about driving. Our biggest problem is when he gets to thinking/talking about his sister. He cannot seem to accept that some of the things she does is because of the Alz. We have had 2 "discussions" on that this week and I have decided to let him think whatever he wants and to do whatever he thinks is right. I hope you all have a peaceful and calm day.
All of the stages are bad - each one has its own "worst" moments. The anger, the abusivness, the not showering on their own, the incontinence, "nobody home" look and act, walking on tippy toes and waiting for the day when the last walk is taken. Trips to the emergency room due to aggressive behavior or pneuomia.
There is something difficult with each stage and each one gets me in different ways.
Lynn is now in the beginning of the late stage and I would have to say, so far… the middle stage has been the worse for me. The beginning was indeed hard and about ripped my heart to shreds. But, we were still an "us" in the beginning. "WE" were still able to do many things as a couple. We were scared to death, but we pulled even closer together in those first couple of years. We did the research, we cried -ranted and screamed. But we had so much good still!! We decided to have our vow renewal early, we decided to spend time together and soak in as much as we could before Alzheimer's claimed even more of him.
The middle stages robbed us of so much. Marital relations, from communications to intimacy ... and everything inbetween. All these things were taken from us inch by excruciating inch. End middle stage, is when the ... to coin Joan's term.. Alzheimer's devil took over my sweet loving husband and turned him into a raging stranger. Those 3 years in dealing with the anger and aggression, I often said, nothing .. not even death could be worse. I still feel that way.
Lynn is now on seroquel and is once again a loving caring man... but I am losing him now. He keeps losing weight and it is so painful to see. He can't recall his family, he has zero short term memory , and needs help with every aspect of his care. I know, it will only get worse......... I can not possibly know how I will handle it until I am faced with it. I can only say, For Lynn the early stages were absolutely the best and the worst. He still had abilities, but he also knew what was happening to him, a hell I can not fathom. For me, each stage seemed the worst to me, as I was living it. Then, came a worse symptom, a greater loss...
My DH is still in the middle stages, (early middle, I think) it's really hard now, because i don't know from moment to moment how he is going to be. Not that he gets nasty, but he doesn't know his own limitations. Someone said on another thread, that he thinks only his memory is effected. That's my DH, Dick. he thinks it's only his memory, but as we all know, it's much more. Capabilities suffer, Judgement,etc are all affected, and he doesn't know nor accept that. therefore we have the problems with driving, as well as other things. unfortunately, my DH never did much around the house anyway. I love that some of our correspondants talk about them putting postits on the cabinets. He never knew where anything went, (we are married 31 yrs, and have lived here for 9) that's my fauly, I know, but the one thing he did was drive. this is a hard time.
I agree with Nikki that the worse time and the most stressful was the mid stage..up to that point, I could somehow pretend that Earnie and I still had a marriage, that we still were connected and our lives were for the most part still together. During the middle stages, I was slowly forced to "let go" of the relationship we had and accept the inevitable...that Earnie was gone and never coming back. His behavior was combative,and he was not "going gentlyy info fhat dark night". He became indifferent to me,sometimers didn't know me, It was as if he was caught between two worlds, that of the life he always had known and the other one to which only he was privy. All of these changes were accompanied by very painful responses from me. I could not or would not accept that I was alone now and had to forge a new life for myself, one without Earnie.
I believe that finally I have been able to accept the fact that my life and Earnie's is now, "It is what it is". He no longer is belligerent, appears more content, and verry seldom exhibits any characteristics of the man I knew, was in love wth, and was married to for 57 yrs.
I've been thinking about this topic since it was posted. I'm not sure what stage would be worse. When DW was first diagnosed, I was not surprised since I had already detected memory loss. As a doctor, I knew what was coming, so did not have the period of panic others have mentioned. At first we continued as a couple, travelling, and enjoying life. One change was that I took over the cooking, which she seemed to enjoy. We are now to the stage where she doesn't remember what happened 1/2 hour ago, needs Depends for incontinence, needs help with dressing. This is adding to my work load, so I guess this is worse. Fortunately, she has not had any mood problems or anger. She still is loving, likes to hug. She just has no initiative, so when I am doing something like this note, she is just sitting in a chair either watching me or sleeping. Sometimes she watches TV with apparent interest, others she seems to sleep through. As others have noted, the loss of companionship, conversation, and team-work is most disturbing and hard to get accustomed to. I don't like any part of this disease!!!!!
I would agree that all the stages are bad - but if I had to pick, I would say that the time before we knew something was wrong and now the latest stage, a solid Stage 5 with early signs of Stage 6. A year ago she was a solid Stage 3 with early signs of Stage 4.
The way she treated myself, our girls, and her friends in the early phases was just horrible. I thought she had become a jerk and I was on the verge of asking for a divorce. But then came the repetitive questions and it was off to the neurologist.
The latest stage has her forgetting who I am and what our relationship is. The kids are frequently asked, "Who is that man?" On occasion she'll ask me if I'm the man in that picture hanging on the wall. All very sad - I don't know how my girls keep it together (ages 18 and 23).
Add: We were at Mayo (Rochester) yesterday. We had the nicest Neurology resident (this kid's going places - sharp as a stick and very nice to my WW). Unfortunately, nothing new to offer us - come back in a year.
I completely agree with Marsh's comments about the loss of the relationship.
Our descent into AD hell has been bad all the way to stage 6+ at present. Each stage was a little worse than the one before, although for different reasons. I daydream about how much better off she was one year ago or three years ago. When I look at our scrapbooks for 10 years ago, I can hardly connect that robust woman with what remains today. Without Aricept, Namenda, Paxil and Seroquel it would have been much worse. Its so sad and heart breaking.
Very interesting comment about being on the verge of divorce. This is so common that I wrote a blog about it - "Undetected Alzheimer's Disease - A cause of divorce?" - http://www.thealzheimerspouse.com/ADdivorce.htm The marriage suffering was also discussed in the CNN article I participated in last February. http://www.cnn.com/2008/LIVING/personal/02/11/alzheimers.love/index.html#cnnSTCText
It is why I am so adamant that doctors and the public be educated about the early signs, and why I feel that the beginning stage is the worst. Your spouse is acting like a stranger; your marriage is crumbling around you, and you have no idea why.
I read your blog entry - and broke out in a cold sweat. What if I had divorced her and then found out it was AD?? She has no living family members (an incredibly sad story on its own - her AD only completes one of the most unfortunate family histories I've encountered). I'm not hijacking this thread, please keep posting your impressions of the worst stage, but does anyone know of a couple that divorced and then it was discovered that one of the spouses had AD? (I guess I would have had to remarry her to protect her.)
I looked back at that blog "Undetected Alzheimer's Disease - A cause of divorce?" , and noticed that there was not a discussion topic for it. I do know one member who did get divorced, not necessarily because of the early symptoms, but because of discord over other Alzheimer issues - it's not my place to comment on that. If she reads this and wishes to comment, she will do so.
However, since you thought of divorce, and I know another male member who was on the verge of walking out right before he figured out it was medical, I am going to start a topic on that now. I will move your last comment and this one into that topic. Let's see if we get any responses.
I wish I knew about stages. I'm feel alone in basically uncharted territory. Since only 5% of people survive small cell lung cancer 5 years, (it's been 7 for my husband) and a rare few have made it to 10 years, not much written on the stages of dementia for sclc survivors. But I will say this, I didn't have a clue to what was going on, thought he might have AD since a brain tumor was ruled out, until I found this site. I didn't even know he had received whole brain radiation until someone here told me. Now I know that is the common prophylactic practice for this cancer. So for me, the stage that was the worst, was not knowing what the heck was going on, why was he acting this way. Most survivors of sclc have a recurrence (so I've learned) and there's no treatment for that since you can't do whole brain radiation 2 times, and they live just 2 - 4 months upon second diagnosis. I just compare notes to others regarding dementia in general. Again, I am so grateful for having found this site, I just can't imagine still searching for answers. I was tormented by the wondering what was going on.
What is the worst stage? Up until a few months ago I would have said that the period before diagnosis was the worst. After diagnosis was horrible, yes. DH took to his bed in shock for a couple of weeks, and I cried so much my whole face looked like Rudolph’s red nose. I lost ten pounds in two weeks. But the period before, when I couldn’t understand why my loving husband of over three decades had turned into a someone I didn’t like—someone I was even afraid of—that was the worst. Everything was my fault. I was “attacking” him if I asked about anything. I was even threatened physically a couple of times. When he was finally diagnosed, I think it was a relief for both of us. We had a name for what was going on. It was easier for both of us to deal with things when we knew WHY all this was happening.
Recently we’ve gotten into another really difficult phase, because DH has developed several additional very serious health problems. We had sort of come to terms with this terminal disease, and I kept reminding myself that at least he was not in pain from this. But now he is having pain and constant nausea, and we are in rounds of CT scans and MRIs and multiple reports with words like “atypical cells” and “tumors”. We had both sort of hoped that something else would come up before AD could claim him, but something horrible with pain and nausea is not what we had in mind. I am at my wit’s end trying to figure out how to manage these other things. If not for the pain and constant nausea, we would let whatever is happening…..happen. But combining pain and nausea and declining mental functioning is really terrible. For a truly interesting situation, add to this my own declining health, and the fact that all of our doctors are nearly an hour away. Some days neither one of us is in any shape to make that drive, let alone converse with the doctor and/or undergo additional tests.
Jan, have you spoken to hospice? You may or may not be able to get surgery for him for whatever is wrong. But hospice can help you deal with the pain and nausea if it turns out that you can't treat whatever it is that has gone wrong with him.
Jan, how horrible. I am so sorry your husband is suffering so, and through him you as well. I can't imagine how difficult this must be for you. I agree with starling perhaps hospice could be of help. Maybe some in home nurses to help you both at this time. I agree, every stage is awful! With each stage you go through, you will think the worse is behind you, yet.... only more heartache lay ahead. Thinking of you and your husband~ Nikki
I am not denial, I know I am losing Lynn. With his weight loss, I am scared to death. I thought I had come to terms with Alzheimer's and what is to come. Yet, I find myself in near panic at times, how can this be happening! How can I stop this! I HAVE to stop this. I was helping him shower last night, and just looking at him, how deathly thin he is... I had to leave the room and just burst into tears.....After a full night of crying.... I change my opinion... THIS is going to be the worse stage for me. :(
No doubt in my mind that to date (and I do realize things will get worse) the worst stage was BEFORE my husband's diagnosis. He went from being a loving husband and father to a total jerk, and became very verbally abusive to me. Now I realize that not only was that part of the disease, but also that he was under stress at work because he must have realized he was slipping and was scared to death. Once he was diagnosed, he was able to retire with good benefits, and our lives almost went back to normal, for about two years. My daughters and I actually referred to that period as the "calm." (With that said, I did go to a therapist regularly for over a year after his diagnosis to deal with all the verbally abusive things he had said for 2-3 years, and I truly think that helped me "forgive" him so I could be ready to be his caregiver, if that makes sense.)This past year his mental abilities declined noticeably, he lost his driving privileges, and he is acting more and more like the sterotypical AD patient I read about on this website, repeating himself, walking behind me all the time, etc. Now we fully realize we are dealing with a truly sick person, and even though he still can do most of his ADLs, we brought in part time help at home, to allow me to continue to work and my high school daughter to not have to "caregive" when she should be enjoying her senior year. I'm hoping that he is somewhat stable this year and able to enjoy both of my daughters' graduations (one from HS and one from college), but we all realize that things could change overnight. Also, and looking back I realize how stressful this was, before the diagnosis the ONLY people that I talked to about anything that was happening was the doctors, and my daughters saw what was happening but we didn't talk about it much. In other words, I shared nothing with anyone, not even my parents (because they would have made me divorce him!) Right after the diagnosis, it was such a relief to be able to talk about it......and our family has been so fortunate to have lots of support. So bottom line, worst time so far was definitely before we knew what was going on.......
I notice almost everyone has said ....so far, I think that is a good point. We can't know what stage is worse, until we have been through them all. There is no right or wrong, it is what effects each of us individually that makes a particular stage worse. Like C , Marsh and therrja said, every stage is difficult and has its own heartache. None of this is easy!
As I have mentioned before, I'm truly not sure what stage G is in..with FTD I think it is different. All of a sudden, he is Mr Mellow and wanting hugs and kisses..so very diferent from the last few years.. which stage??? I am just going with the flow. It would seem that our daughter has finally accepted the illness her wonderful dad has..makes it easier for me, and she is very much a part of helping with whatever. I guess I was just protecting her. Our son is in tune with the whole thing..total surprise to me, but so welcome.
Joan, thank you so much for the off topic threads. Now we can read and learn about Alzheimer. The worst stage for me so far with this disease I would have to say was stage 5 and 6. Not that all the stages have not been bad, of course they are but in different ways. During stage 5 of this disease my husband changed from being the wonderful guy that everyone, he became a person who wanted to social contact and did not want me to have the social contact either. Then came stage 6 where much more of the ADL was needed and I was having to learn how to control the night time problems. Looking back at the thread I started on incontinence it reminds me all too well how hard this stage was.
We are now stage 7 and hard as it is I have to say it is easier than the previous two stages, so for me it was stage 5 and 6.
Early on was difficult for me since we were losing him in many ways in addition to having to figure out how to take over in our family business that he was always responsible for. I guess now I've adjusted to the pain and have lowered my expectations for our future. I still wake up every day in fear of incontinence. Will I actually be able to adjust to that? He is in stage 5 with some 6.
We have been battling and losing in this disease for 10 years now. Bill is currently in 7th stage Alzheimer's and for me, this is the worst. He always remembered me, up until a couple of months ago, he would still walk up and put his arms around me and hug me as he always did. He is not bedridden yet and he is still ambulatory somewhat. He is incontinent most of the time and he refuses to let me either put diapers on him or change his clothes. He walks around with feces and urine on him and he actually physically fights me and won't let me change him or change himself and it just breaks my heart to see this wonderful, kind man have to go thru this. He was always so clean and neat and now it's a battle every day. He sleeps in his clothes and shoes, fortunately, I applied for the hospice benefit from Medicare and he now has a hospital bed which he will sleep in. I too, welcome the day when the good Lord releases him from this battle. I know in my heart he would hate being this way and when he goes, he will be whole again.
I agree with Nikki, that most of our posts have to read SO FAR. For me, so far, the early stage was the worst, before I found this website and learned that I could get medication to deal with the anger. Since Risperdal things have been much easier. BUT I am dreading the stages that I know are coming: when he can no longer ride a bike, when he may no longer want to go to movies and concerts or to visit friends. WHen he becomes incontinent (we've had a couple accidents already) or may not sleep the night through as he does now. Or if he won't be able to go to day care, which gives me the respite I need right now. I can't help feeling that the worst is yet to come. ANd we haven't heard much yet on this thread from our starlit widows and widowers who can look back over the whole process. I should think that the final stage must be really hard, especially if it lasts a long time.
Well, our final stage lasted about 5 years and it was, by far, the easiest for me. By then he was bedridden, could not communicate, he was contracted, and couldn't fight anymore.....as hard as it was to watch this strong man turn into a helpless "infant", it gave me the opportunity for me to bring him home and care for him the last few years. Everyone is different, but I had made my peace with the disease and the consequences many years ago, so I approached it more clinically in the last stage and made it through and was very grateful when he finally was released and could rest again.
I hurt for all of you when I read what you are dealing with since I know so well all the anguish, heartbreak and pain that is involved in caring for an AD affected spouse. But, just remember that you are going to make it....you have to carve out a space in the midst of all of this for you and, there is life after this...honest, and it is a good life...not the one you planned, but a good one if you allow yourself to live it.
I am not really sure what stage my sweetie is in but I am worried that it is progressing rather quickly in relation to the changes of stages. When I think back now, ain't hindsight great, I find I wonder just when this whole thing started. I know we all feel so stupid that we didn't see what these road signs were telling us..it makes me feel like valuable time was lost. I think our last normal Christmas, when DH fully participated, was 2008. He was always the one who would find just the right thing for all the men and boys on our list..I was always amazed as he hated to shop for clothes for himself..just the basics for me thanks was his view. Last Oct we had been given the diagnosis and I was concerned about Christmas..he likes the tree but was too much effort. He checked the lights and my grand daughter and I put the tree up and Grandpa put the star on top! If our grand daughter had not got him to go shopping, there would only have been the little gifts I salted for me under the tree. I got him some things he needed and put things in a decorated and festive way and he loved it. I just did not want him embarrassed which i knew he would be...But going back to when were the first tell tale symptoms? I think 2008 late in the year..when I would be telling him something and I would have to go over it again and again before he got it and he remembered it but I felt like I was speaking Greek. Now I know what was going on and then this summer after a trip I took with our middle girl, I saw some things that needed answers. Was he looking at the paper every day for the date and day because he could not see the calendar on the fridge? was he not getting enough O2 did his sleep apnea machine need adjusting? Then the EEG and bloods were done along with those humiliating memory quiz questions and then the verdict was in. I still think I must be in denial but at the same time I did enroll him in safe return, and know I have to call the lawyer this week, I am at the point where I know he should no longer drive., and his brother is backing me up with this too, I am dealing with medicines right now..getting him to change his box to the morning and evening styles and getting him to take his insulin before meals...he still does take showers on his own but not as often and his hair is mussed and he does not like it when I remind him to comb it, he does not change his clothes like he used to do..so many things. Add to this, we don't have any conversations that mean much.. I mean important topics of the day we don't talk about anymore..he just shrugs it off, offers to help but with his shortness of breath there is not much he can do other than empty the dishwasher or make the coffee. For sure the one person who made me feel secure in this world is already gone..yet now and then he offers some really sage advice so I have to remind myself not to dismiss things he does say. I do find he ruminates over things..like someone coming to visit..it is as if he has to work really hard to remember what is on the schedule. And having watched my mother and my uncle descend into this Alzheimer's hell is almost more that I can stand...it is like having precognition. I feel like I am standing on railroad tracks, facing the on coming train and can't get off the tracks or stop that damn train..
Mimi, it sounds like you are at a difficult stage indeed. I wish you strength and acceptance: you will need them. Thanks, Sandi, it is so good to hear from those who have been through it all and emerged ! But five years for the final stage: what a long time. Your story is an inspiration: yes, we can make it through.
Mimi, what a great analogy! I've often said I feel like I'm on a treadmill and can't get off :o)
I think the toughest time was back in the beginning. I was so scared, understood so little, and was sooooo overwhelmed. There had not really be an easy time though. Hmmmmmmmmmm
For me, every stage has been the worst....except for now, since John is in a Nursing Home. Hands on care and fear has been lifted from me. I'm just waiting for the next shoe to drop in his decline....and worry about all the legal, financial and family issues that cling to my back like demons. Unlike most of you, my husband fell from his 'pedestal' years ago. Mr. Nasty went to Mr. Real Nasty over time and I wonder if many years ago, he was then exhibiting signs of his disease. Or, I could just be making excuses for a bad marriage all together and I've just stood with my feet in concrete, afraid to move on. Right now, maybe this is what I'd call "hard". The NH's attorneys in IOWA are picking apart all of my documents, healthcare surrogacy, POA, everything, and calling the shots as to his care themselves, further alienating me from John. Looking at John, I KNOW he'd not want to be picked and probed at and kept hanging onto life like this. It is horrifying. I've witnessed them question him as to his health care ..... if you ask him just right, you can get the answer you want from him. I don't get it. I've felt worthless to John all our lives together (probably my fault - for staying anyway) and now I feel even more worthless to him.
I had never read any of this thread until today. It's funny how you teach yourself to adjust. I tell myself, and sometimes I even tell my DH when he is particularly depressed about it, "Hey, we are doing fine, aren't we? We can handle this." Then when there is a noticeable descent, it takes a few days to adjust and then I am telling myself the same thing again, "OK, I've got this under control. I can handle this." And so it goes on.....
For me, there is only 1 stage of eoad... you either have it, or you do not. My dw constantly exceeds the expectations of any stage, and in her own way, it attempting to earn gold medals in every event. I think the issue is coping, not in evaluating what stage you are in. My dw most likely in in late stage 6, but mysteriously her long term memory is flawless, she is aware of her condition and decline, yet cannot put a t shirt on or make a sandwich, cannot turn off a faucet, and cannot utter a complete logical sentence. I can tell that her brain is working overtime with all the thoughts that fly into her brain, but somehow, very little of it is allowed out in either action or words. Somehow, I picture eoad judges that watch patiends, holding up their little voting signs...5 6 6.5 5.5 5.5 6.6 7.0... Again, I wish the disease had more consistency so that all patients were the same. I tend to compare my dw with other known eoad victims. My dw might be in stage 1 as far as memory (long term), stage 6 as far as behavior and speech, stage 5 for reasoning, stage 6 for motor skills, stage 3 for comprehension, etc.....Technically, are we supposed to average out all these points and come out with a "rating"?? I am finding it completely useless to attempt to label a stage...Logic tells me that the disease will progress from 1-7, and no one has gone from 7 to 1 yet....I understand the term progressive terminal disease, and I expect that each stage will be easier in some aspects and more difficult in others.... I just cannot wait for the angry stage to go away...
phranque-in a sad way it is easier when our loved ones reach the end. They are no longer aware of what or who they are-but we remember and it hurts. Terribly.
Oh Phranque, it is so hard, but who's angry stages goes away first, ours or theirs???? I've been "lucky" seroquel has taken care of Jim's anger, but so many of you still suffer with that horrendous behavior.
As I stop...and look back.... which I don't do intentionally like phranque's wife...Tom's all over the board. It's tough to nail that guy down and I see the stages as useless.
I've been waiting for some things to happen which haven't and almost got caught with my pants down when he went into full blown I hate your guts get out of my life or I will remove you stage.......risperdal calmed the beast and gave me back more than I dreamed of getting.
But looking back from here the very beginning of the journey was worse because I was clueless about everything, sacred and didn't know where to turn. I was freaking out inside and had to go on zoloft .......
I didn't know people who are 50 or younger get this disease that I knew nothing at all about.... than trying to keep us afloat while Tom was putting holes in our flotation devices..... and convincing family and people who mattered what was wrong with him so they would help me........
Education...education....education! I hate this disease ...... but it is what it is..... acceptance is key with knowledge ....... emotional support and validation is a must for the caregiver to survive........ and "drugs are good!" : )
I think the beginning is the worse, no matter at what stage the beginning is for you. Most newbies come in here feeling huge guilt about being upset and complaining because they are sure everyone else has it worse. You don't know about the disease. You don't know anyone who knows anything about the disease. You are fighting to get a diagnosis, and don't know how much of a diagnosis you need (mostly a lot less then your think you do). And if things are really bad, the doctors are fighting you, the children are in denial, and your in-laws are refusing to listen to anything you say.
In many ways I had it easy in the early stages and they were still the worse. I've never had to fight with a single doctor. The family doctor fixed that by starting everything with a speech therapist. You can't fool a speech therapist who specializes in stroke victims. My daughter had friends who's parents, grandparents, uncles and aunts had dementia. As a group they are the most with it 40+ year olds I've ever heard of. And I don't have in-laws.
I also knew enough to find groups like this one pretty early on.
I agree with the others - the beginning is the worst as starling has described - you don't know about the disease or anyone who has it, the behaviors are unexpected in a previously loving marriage, doctors need to be convinced something is wrong and for us, DH refused to believe/admit anything was wrong. But I also know each stage as it comes will be hard in it's own way.
We're still in the early stages, so I can't say which stage is hardest. I agree with what Stella said about the stage I'm in now, though. It's hard to feel like I shouldn't complain, because the things others are dealing with seem so much worse. And I get angry with family and friends who either deny anything is wrong or don't want to know about the disease. I am lucky that like Stella I didn't have to fight with doctors. Also, I knew how to find information and groups like this one.
Learning Kathryn had Alzheimer’s was devastating. She is full stage 5 and seems to be moving into Stage six if I go by the stages on the Alzheimer’s Association web site. Right now is the worst time without a doubt. Last Thursday I had to take Kathryn to the GYN doctor for some lady type things and they also had to take a biopsy while doing the other check up because they think there is still a chance she may have cancer (just a small chance). This has caused her bleeding and cramps for several days and that has upset her. She keeps telling me she doesn’t want to have to do all this any more and would I please not make her have to have this. I assured her that the bleeding and cramps would stop soon and she told me she didn’t want to do any of it any more and asked why I make her have to have this.
We are having this same discussion a couple times a day. I know that she has to substitute words because she can’t fine the words she is looking for to say what she is really trying to say and that she doesn’t really believe that I am making her have this. When she tries to do something and can’t do it and thinks she should be able to do it she becomes upset and cries more these days. I can’t stand to see her hurting and there isn’t a thing I can do to fix it.
The worst part for me isn’t a stage. It’s when I see her hurting so much and I can’t do anything to help.
I, too, feel helpless that there is nothing I can do or say to make it better for either of you. Maybe just knowing there are so many of us who are offering understanding and support will help you cope.
Joang, that is a fact. I can't talk about Kathryn's problems in person to anybody at all because it becomes hard for me to talk and it is all I can do to not cry myself. I can deal with almost anything without becoming emotional but when it comes to Kathryn I become overwhelmed by emotion. What I can do is type here and it is ok if I have to stop and take a break so I can get my emotions control again and then continue.
I know people are trying to help when they see that break while I am talking about Kathryn, but the truth is it doesn't really help me. It really makes it harder for me to get myself back under control. BUt when I am typing here I don't worry about control because it is ok to have weak momments. The only one who knows is me and I have learned to accept it in private.
I can not tell you how much help it is to be able to just come here and relax without worrying about what anybody here thanks because I know everybody here is dealing with the exaact same issues.
I will never forget the email I received from you inviting me here. You have made a differance in my life.
Thank you so much for all you and everybody else here iare doing to help each other and me.
recently, my DH forgot who I was, worse than that, he kept asking for me, and was terribly upset that I had left him in the care of his mother. He ranted and raved, he cursed, he cried. What did I do wrong that she left me???, with the addition of Namenda and Xanax, and going to day care 2 days a week, he suddenly recognized me and has known me for about 3 weeks now. but that was the worse, and I know it will come again, i'm not looking forward to it. Honestly, I wouldn't care if he didn't know who I was, but the pain of his missing me was by far the worse, for him and for me. but then, who knows what's next?
The first years were the worst, so far. 2002- Forgetting and losing items. Forgetting he had a daily alcoholic beverage and continuing to drink during the day and into the evening. (He was a closet drinker) Personality changes and trying to compensate by lying and covering up. Yelling, insulting remarkds toward me, accusing me of going out with other men. Getting lost, saying inapproptiate things. Losing his job. (Mechanical engineer) Making unsafe judgement call related to the grandchildren's safety. Leaving food on the stove until smoke was billowing out the door. Up at night sharpening knives and I was behind a locked door trying to sleep. I quit my job to stay home with him 2007. After he got lost and was found in another state, I no longer allowed him to drive. (2007) Now in secured ALF. More docile now. Staff still has problems with him though. This is just the tip of the iceberg. But the first 9 years were definetly the worst, so far. We married in 1998. The pain of the loss is ever present. Diagnosis FTD.