I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog, and post comments and opinions here. After re-reading it, I kind of felt as if I were whining a bit, but sometimes, it all is just too much to handle.
I didn't think you were whining. You said exactly what I've been feeling this week - although my situation is not nearly as bad as yours yet. I feel so lonely most of the time, although I have wonderful friends and sons. I miss my husband. Wish I had some incredible advise to offer, but I don't think there is any. Now I'm whining.
No, Joan, you are not whining, you are just telling it like it is. My situation is not nearly as bad as yours, but our partnership is also broken to a great extent. I hae to do everything now - no partnership-. Only good thing is that he is aware of this also and tells me daily how much he appreciates me, that even though it is hard on him, he knows it's harder for me. That's why, for now, I can live with it and let the things go that irritate me - moment by moment.
My heart goes out to you and all you are going through. No one else understands except US. Bless you and hugs.
I am told by every professional with whom I speak, that I will only find peace when I accept the loss of my husband as I knew him, and live with and relate to the “disease”. Easier said than done. Joan-these are your words. You will be eaten alive until you do this.
Joan, I have been thinking lately that it is not the subject (driving) itself but what it is doing to his/her PRIDE. Lately, my LW has been repeately coming back to me or someone telling her "No! you can't do that". I have been reviewing all the things that bring up something that could or does turn into a disgusting argument and it always seems to be something that attacks their PRIDE. Men may have pride in their manliness, their "man of the house" their fix-it talent, etc. But woman have great pride in their appearance, their homemaker ability, their decision making leader of the household items, etc. If we take those things away from them it hurts their PRIDE and the fireworiks begin. I am an engineer, not a psychologist but it seems that their brains still have the PRIDE cells. All our personal rules for averting arguments, that you mentionede, work sometimes but I am beginning to believe more and more that I have somehow insulted my DW's pride. And that is really hard to repair or ignore. She also remembers it soooo long!!
Your writing was great and I think will help most of us. You were definitely not whining. Bill
Joan, the professionals are absolutely right....you have to detach....I know it sounds easy. For some it is...for others maybe not so much. My husband's neuropsychiatrist was the first one to point out to me that I had successfully detached and that is why I was doing so well. I didn't know what I was doing, I just got tired of the "crap", was tired of the verbal abuse, accusations, snide comments and the disease and I shut down. We were together since he was 16 and I was 15...we married 5 years after that and were very happy and had a wonderful marriage. But, when he turned into the "stranger" I couldn't deal with that person. So, I went into caregiver mode....I made sure he was safe, took him to appointments and to social gatherings as long as he was able to go, tried to tend to his bathing, shaving, etc...when he would cooperate. I put him into day care five days a week so that I could get some peace and quiet and I just went along with the program. That is not to say that sometimes I didn't shout back, hurl the insults back at him, and threaten him with all sorts of things. I am not proud of those moments, but I am a human being. Things happen!
When I couldn't put up with the daily grind I found a place for him to live for a couple of years...again, not an easy thing to do, but one of us was going to survive this disease and I was determined it was going to be me. He was medicated to control his anger and soon descended into the hell that is end-stage Alzheimer's. At that point I knew I could deal with him again....so, I brought him home and cared for him until he died.
It has been a year since he has been gone but it seems so much longer...because it is. I started noticing changes in him way back in late 1994...it became real apparent in 1996...so, for all intents and purposes he was gone for a long, long time.
Dear Joan, you are going to have moments when you would like to slap Sid silly...or at least I had those moments. I didn't fret over it....I didn't analyze it....it just happened. I just figured I didn't get the "caregiving gene" and I would just have to muddle thru...and I did. As will you. It does get easier....as the disease progresses, the anger subsides, the remarks become fewer and farther between, the ache in your heart turns to acceptance and you make a new life for yourself.
Joan so sorry you are feeling so defeated. all of us here at some point have witnessed or will some of the very things you are saying. the partnership, is over. gone. you are a now single entity doing it all. with no rewards or 'well done' as an after fact. from what we'ved observed, i do think your Sid has some observance and thinking process left. and its my own opinion that he dwells on this driving issue as he KNOWS its a hot spot and stirrs you up. you let it drive you insane from the beginning and he learned how to manipulate you with this topic.its his way of getting back for feelings of inadequacy. i also think he is jealous of your be able to carry on and being of importance in the world and among your friends and he has no recourse but to irritate and try to bring you down to his levels. if he cracks you too then you WILL be a partnership again. a strange thought process but i do believe its true. its my opinion you just get it out of your system and quit bottling it up. let it out and scream at the top of you lungs if it makes your point and you feel better. he wont remember it 'all' anyway but will try to rehash what he does. its not human to be able to turn a blind eye all the time. your own health is suffering we can all see that here. his meds are not working ENOUGH if he is able to bring up the driving issue on cue. therapy is going to tell you what you already know. avoidance, walk away, dont engage...you know already this, i would up the meds more. til i could live with it -having them on more meds and out of it so to speak has saved more than one ofus for a period of time. my DH slept alot on zyprexa yet it was the only way to get thru that dreadful time. i am sorry joan, i hope you get to feeling better some soon. we are here holding your hand and you are a hero to us all. i also beleive you are taking on way too much envolvement these days and its wearing you out physically somuch you are unable to deal with the mental aspects facing you. SLOW down.! orders private joan. divvi
Of course you're whining. If you can't whine now, when can you? Part of it's being too much for you to handle is that you are stretched pretty thin with other committments and I promised myself I would not nag you about that any more, one does what one has to do, no matter what. I'm a Pollyanna and a goody-two-shoes, but I've never been a really good little girl. Somewhere along the way I learned that the sky would not fall if I didn't do something just right--and I refuse to do guilt. I didn't cause any of this and I will not feel guilty, I just will not, I push it away. Once my mother came to my house and said, 'Betty Lee, how come every time I come to your house there are dirty dishes in the sink?' I told her it's because I know she will do them--which she always did to 'shame' me. It didn't work, my house, my dishes, my choice. My sister never has a dirty dish in her kitchen, never, never, never--at 87 she's still the good little girl. BTW, I had a good Mom, just a little nutty about some things. I tell you this personal story because part of what happens is how you accept, reject or internalize what others think is the right thing for you to do.
Part of being told over and over again and being annoyed endlessly that 'accepting' it is the disease that makes our LO's do and say horrible things is to understand that it can still hurt and that you are human enough to cry and blow your top. I know I screamed at DH only to have him stare at me with complete astonishment because he had no idea what I was yelling about--and, of course, that made me even more frustrated. Our reactions are all part of the disease, symptoms, if you will. Often enough when I remember certain incidents, I feel bad that I hurt him--but good grief, I'm not a robot. I never meant to hurt him, I never hit or abused him, but if you get poked with a cattle prod, you'll react no matter what your reasoning tells you.
The emotional strain of spousal CG is all but beyond endurance, our dreams are shattered endlessly--and if you have an iffy marriage, it can possibly be worse--and as time goes on the physical strain can take away from our own well-being as well. I don't mean to minimize any of it--been there, done that. But acceptance is on many levels and accepting that you are human, that you are sometimes fragile, hurt, frightened, angry--add whatever words fit--is part of it. None of us can accept any of this with a smile and a grin. Cut yourself some slack. Just let anyone try to judge our reactions--just let them try!
Well, I apologize, this is getting a little too preachy, I can get carried away. But, I close with this caveat: Ladies, you get those mammograms, don't put it off; men, you know what you need to do. Everyone, keep tabs of your all around health. What Joan has written can cause on-going medical problems in the strongest of us. You must see to your own health, you must, especially if you already have an existing condition. And, I know from personal experience how easy it is to put if off and that it will stay with you. I'm glad Joan was able to vent--it helps a lot & thank goodness we can do that here, but this is serious stuff.
Joan, I want to comment on two issues mentioned in today's blog:
Re detaching emotionally from our spouses: I know that I could probably do this if my husband's behavior was consistent. What Sandy said above certainly makes sense. However, Steve goes back and forth between two worlds. Most of the time, he seems pretty much like he always was (mood). However, at other times, he just gets really testy, beyond irritable--on the verge of nasty. At the daycare, he hits and pushes people. I'm dealing with that problem now and as of yesterday, his doctor increased the Seroquel. This is a guy who still sits on a Board of Directors of a nonprofit almost 4 years after dx and fits in! So how can I detach when most of the time, especially around me, he is still lovable? Yet when I get the dreaded calls from the daycare that he's acted out, it really drags me down. I think roller coaster is the right way to describe this experience, and it does make it hard for me to detach.
Re couples who had good marriages that say the disease has made them closer??????????????????????????????? You mean people dealing with a dementing illness have told you that? The only way I can imagine it is if one or more partners were emotionally distant in the past, and this has made the ill spouse dependent on the well spouse, so now there is a closeness that didn't exist before. I have read this about children caring for a parent. Or if the ill partner was always difficult and the disease has made them more docile. However, I've never heard of anyone who had the wonderful relationship you've described with Sid (in your past) say that dementia enhanced it. Perhaps someone else here can enlighten me?
However, I've never heard of anyone who had the wonderful relationship you've described with Sid (in your past) say that dementia enhanced it. Perhaps someone else here can enlighten me?
I agree to the second part. I cannot imagine unless, maybe they went from being abusing to being docile.....If my dh had drank and beat me up before AD and then turned docile that would certainly be a relief...I think.. if I were a quiety, docile human being, which I am not. I have strong opinions about most things.
I have been detaching from dh the last few years. It does help. I sort of compare this situation to the one with my Mom. I have been grieving things we have missed for several years. I know things will never be "the way they used to be".
Marilyn, I have indeed seen books and articles, written by spouse caregivers, who had good marriages and felt that they were even closer after the diagnosis.
Less than a third of AD patients develop rage/aggression, and I'm sure it's very, very, very different when you have to deal with that.
My husband and I are not very far into this -- diagnosed with moderate AD not quite four years ago, symptoms since 2002, currently stage 5/6 -- so perhaps the way I feel will change. But we have always had a very close relationship, working together as well as living together and traveling together, and I would say we are even closer now. He was exceptionally intelligent, a very strong man, senior executive type, and a born leader. I can still see that in him, even though he stopped being able to do his job in early 2003 -- the core personality is still there, even if I have to help him bathe these days. He has always been very loving toward me and is even more-so now, he just expresses it differently.
Sunshyne, I can understand what you are saying. Yes, the rage/aggression is a game changer. It's very difficult to show compassion for someone's losses when they are breathing fire! The way you describe your husband in his former life also fits mine to a T, I would add independent and a take charge personality, but compassionate too. It's funny, Steve and I spoke to a group of dementia professionals last month and at the end, after hearing the banter between us, one of the participants asked us if the disease had brought us closer together. My response was no, our marriage was always a special one. I guess it still is--I hope it can always stay that way, even with the disease.
Joan, I am sorry you are going through this. Somethings do drive me crazy. It changes from time to time. When something is lost or not working DH obsesses about it. It changes from day to day. Tuesday, I had to take him to buy a watch because he lost or broke his. I think the real problem is that he is having trouble telling time. He constantly loses things: hats, gloves, his arm brace, his wallet. It used to be keys, but he no longer drives. He cannot do any house chores and when he tries it just gets more difficult to do them. He put dirty clothes into the dryer and then asked me what kind of detergent to use. Last week I cried all the time. Today is my birthday. He didn't remember, which is okay, even though his birthday was yesterday. Two of my sisters called to wish me a happy birthday and I told him why they called. I said today is my birthday. He said, I know. That was it. It does get hard. I think it is different for each of us. Just as each of them is different.
<<Less than a third of AD patients develop rage/aggression>>
Sunshyne, I could hug your neck for giving us that information! I'd feared, reading on this forum about rages/aggression, that many spouses seem to be dealing with, that it was probably only a matter of time before I would have to face something similar. Do you have some of your famous "research" to back up that statement -- if so, don't you think it might make a good heading for a new thread, to reassure some of us who've been sort of keeping their fingers crossed?
Also, Sunshyne, while you're responding to G'chipper--Steve's dr. has said he's done "better than most" regarding rage/aggression. At first I thought that he meant that most AD pts have more serious issues with it than he--but based on your stats--that's not true, since 2/3 never have it occur at all.
Then I realized that his aggression always seems to have a discernible trigger--in other words, you can figure out what set him off. Do you know of any research on rage after "triggers" vs. random rage in dementia patients?
Joan, I am so sorry you have to deal with all of those rages. It is not fun, nice or any other description like that. It is awful and worse. It took me a long time to accept that the anger was there. It helped that I always had a sense of humor and could often redirect him using it. It also helped that in between the rages, he was very loving with the hugs and kisses. The hardest part was trying to figure out what would work to calm him down. Yes, I also lost it on several occassions and often did not handle it well.
It does sound like his meds need to be readdressed, but from the reading I have done here and elsewhere, it also sounds like with FTD finding the right combination of drugs is a lot harder.
Hang in there and thank you very much for giving us a place to vent - you are allowed to vent/whine/etc. here too.
Joan, You and Sid had a very busy week. Travel is exhausting, you were running around, and not for fun, but for serious business. And, you were worried about Sid. Sid was managing and had lots of help, but it is not the same has having you there.
Then, you had the walk on Sat. Again, places to go and things to do. On a schedule. Both of you are physically and mentally exhausted. Remember how kids going to school had a melt-down when mom picked them up? All those frustrations got dumped on mom, not on the teacher.
You need to give yourself some time to unwind. And Sid needs a little time to re-orient to having you around. And, it's ok to lash out (verbally) at our spouse occasionally, since we are only human.
I do feel it is easier when your spouse becomes less the person you married and more of a person who needs care. When there are more things you need to do that are "caregiving", you see less of that person and less of that previous relationship.
Please, forgive yourself, get some rest, and consider whether Sid might indeed need more meds, and/or you need more meds.Perhaps call someone from your support group who you can talk to.
Remember, We didn't cause it. We can't fix it. We are doing the best we can.
First thing that popped into my mind on reading your blog was, Sid's acting out because he's jealous of your time away and activities, while he was left home. The driving issue is his weapon to "get even". It doesn't matter to him why you were gone, what you were doing, nor that you had arranged a full set of activities for him while you were gone. Just like the child given an expensive toy who picks a fight with another child with a dimestore toy, because it looks like more fun--jealous.
This topic is one of the few where I can say I'm lucky to have CMT. I learned growing up to look for other ways to deal with things--think outside the box. I learned early to look at the goal and then figure out how I could get there--not always the way "everyone else" did. Yes, I had bouts of self-pity, anger, sadness; but they don't help and they don't change things. You adjust, make do, chose another path, whatever it takes. When we married I knew DH was significantly Learning Disabled, even though it took until 1987 for me to actually get him diagnosed, in case there might be ways to help him cope better. There weren't. His physical capabilities and my mental ones meshed nicely to make us a team and we did a lot of things I'd never have thought possible for me to experience--ice fishing, rustic camping, small game hunting. And then Mental Illness came on the scene. I adjusted, worked out alternative ways to get things done. I made the mistake during the first 2 years of this new life, of taking care of everything but me, and ended up with Depression. With the prodding of a good friend I sought help, both medicinal and with a counselor. The medicine got me operating again but the counseling taught me how to stay that way. The keys are: ID the problem and to whom it belongs. If it isn't yours, ship it. If it your's to deal with determine if it is fixable or something on going. If it's fixable--get it done and it's shipped. The remaining problems then are like my CMT or DH's VaD. Whatever has cropped up gets addressed and then the condition goes back into my mental storage compartment until it acts up again. Do I blow up--rarely. Do I get frustrated--oh, yeah. If I pop off at something he's said or done and upset him, do I feel bad? Of course. But, I'm human. I make mistakes. Sometimes I forget the rule of respond don't react. But the bottom line is that while he is my husband and I care very much about him, I cannot center my innate self on him and his care. When he's off to bed at 6:30 I'm reading, e-mailing; on the phone, knitting, etc. I have plans to do things, and wishes for other things to bring to fruition. When you make the separation between yourself and the self your spouse has become, it is not a negative. It is a positive that will get the two of you through this. You'll see him through in the best possible way you can manage and you will survive and go on into a new stage of your life. You'll both beat this in the only way possible at this time. I'm in this to win.
Joan, I wish you had been next to me in my car today. I was wondering, as I was crying once again, if anybody knows how often we Alz spouses lose another piece of our D/H/W's and feel all alone and cry, or scream, or "lose it"? Accepting the disease is an ongoing process which, even when I think I've taken a step in that direction, my DH takes a turn that makes me feel like I've been slapped in the face once again. This week it was having to take away all access to credit cards and start the same for banking. I feel like I am taking away all control that my DH has and it is one more fact I have to face about his disconnect to every day things. It makes me so incredibly sad and angry!!!!!!! When I do feel a level of acceptance, I remind myself to enjoy that time, I know I will cry again, and feel the myriad of emotions that we all go through over and over and over again. Thank G-d that I can come here and hear that I am not alone after all!!! Sue
SusanB, You are not taking away all control your DH has. This disease has done that. He no longer can control the finances. And many spouses have found this out too late. You are stepping in to pick up the control he no longer has, to manage them for the both of you.
i worry about you and the 'whats to come' stages, joan. hes not that far into it and showing alot of agressive behavours this early on. you need to stay on top of it and get him under wraps now or it can escalate without much warning as others iwth FTD can testify to. please talk to his dr again and yours. some of these meds need to be modified on a constant basis as they tend to lose responses with FTD-divvi
Joan, I keep telling newbies on this board that it is OK to vent and this is a safe place to do it. You built this safe place. You are allowed to use it too.
Am I disconnecting? To some extent, yes. Does it help to disconnect, at least a little. Yes it does.
Tonight I took out the knives I use the most and I sharpened them. That was one of his jobs. He saw me using the electric sharpener that our daughter had bought him as a Christmas present 10 years ago and didn't recognize it. Which is why, I realized about 3 months ago that my knives weren't sharp anymore. I got my son-in-law to teach me how to use the machine, but this is the first time I've gotten it out on my own.
Every time I take over a job, I feel loss. That is the way it is.
I have had just enough experience with violence to beg you Joan to get on the phone with his doctor NOW. And if being told the same old, same old by the therapist you are going to is all you are getting from him/her, fire him/her and get yourself someone better. One of the things they are supposed to do for you is let you vent the stuff that it isn't safe to vent when you are alone.
My experience with therapists has not been good. One of our kids and husband saw therapists. They seemed to just want everyone to be happy. Supplied books about improving self image but not bringing out true and sometimes negative feelings. When Bill was off the wall I saw a therapist because I thought that was the thing to do. She asked me what my plans for the future were and what my activities were all about. Her response was that I was doing just fine and come back next week. I felt so much better after seeing her that I didn't go back. I realize that therapy is truly a good thing if you find the right therapist.
Joan, I posted last week that I finally exploded & it felt good. How long can a normal human being keep it all inside? Tonight the power went off partially in the house. I asked my husband to come downstairs. He had started the dishwasher, I had a load of laundry in the washing machine, then I turned on the microwave. This had never happened before in 11 years. He asked, what was I doing down there? I told him I was washing clothes. Again, what are you doing down there? "I SAID I WAS WASHING CLOTHES." Well, he said, why would you wash clothes with the dishwasher on? I told him he started the dishwasher after I had already started the washing machine. His response, what are you doing down there? Then, you should know better than to turn on the microwave. I swear, it is exhausting. I just walked away. Not the 1st conversation like this today. I will be so glad to go back to work tomorrow. My days off are harsh. Isn't that pitiful?
I am not a saint, nor are you Joan. We are just trying to do the best we can under extreme stress.
I have been so lucky that my husband isn't violent or aggressive at all, especially now that he in the late stage of AD. In the earlier stages....probably 5-6 years ago.....he would be very sad and try so hard to cover up what was happening. He absolutely didn't want anyone to be told that he had AD although everyone knew something was very wrong. There are things he would argue about and even though I was right and he was way off base, I know he was just "an old lyon trying to roar." But now, I no longer can hear his voice even in that mode.......and oh how I wish I could. I miss his voice so badly. I miss him so badly. But having said all that, I still sometimes (many times) scream to the top of my lungs......and cuss.....oh my gosh.....I've never cussed so much in my whole life. But it's all out of frustration. As you all know, it's hard to dress a grown man when he offers no help at all.....raise your arm and the foot goes out.....give me your foot so I can put your sock on and the arm goes up.........raise you head so I can put this pillow down for you and he opens his mouth as wide as he can. We've all had the long conversation here awhile ago about the torture chamber (the shower).....that can make the best of us lose it! So there are plenty of reasons to scream and yell and cry our eyes out. The really good thing about when a person is this far along in AD, they know you are upset for just a short time and then it's gone. It's a really good release of tention and then it's over for me and of course him since he can't remember two minutes ago.
The emptiness and sadness is now the most overwhelming part. If we could all collect all the tears that we have shed.....from the beginning of this to the end......what a supply we would have.
Remember that movie with Christopher Reeves "Somewhere In Time" when he pulls that penny out of his pocket and sees that it is 1980 something and all of sudden he zooms away from his love (can't remember her name) and she gets smaller and smaller until she is gone and he is back where he came from totally lost and sad? That's how I feel now 12 years down the road with this horrible AD.
bluedaze - you are so correct - hard to connect with a therapist that works well. My career was in Mental Health Counseling as a therapist. I think I am a good one and have excellent training. I THOUGHT that was a "given" in the field - not so. There are so many bad ones out there and it is a shame. We have sought therapy, couples therapy, etc. during this trial. My husband tells his stories in his own charming way and they always thought that he was wonderful and entertaining and that I was picking on him and being too controling. They were more harm than good.
I finally decided to try one more time as I really think that is a piece I need. God was good to me as I found an excellent one that takes Medicare and my other insurance. She is very supportive but not gushy, she is very direct but very compassionate and sensitive. I had not worked since we moved here so I didn't know anyone in the area.
She has suggested that this process perhaps is like being married to an alcoholic where you have to lovingly "detach" from the dysfunctional behavior that they do and to set boundaries for me to keep from being pulled in to a situation that would not work for either one of us when he is not rational. I am always using the word control. She corrects me and tells me that I am in charge. There have been times when my husband has been in charge and now it is my turn. It makes me feel better being in charge rather than controlling. Controlling feels like I am the mother and he is a little boy. Even tho behaviors are very juvenile at times, I am still his wife, not his mother.
I have been re-reading the book CoDependent No More. It is an old book and I have used it in my practice. It is helping me sort out which caregiving is productive for me and what are the things that I do out of my own anxiety that don't fit the situation and sometimes make things worse.
I hope this isn't offensive to anyone. I don't mean to be giving advice - like when my "friend" gave me Dr. Laura's book saying that all I needed to do was feed him good meals and have as much sex as he wanted. I wish...... I know we are all different and what works for one, doesn't help another. It is working for me because it is helping me sort out where I should spend my energy. For the most part, I am well intentioned, but sometimes I need a level head to help me stay on course.
But does it take away the hurt of four years of my sweet loving husband of 40 years being angry, raging, calling me names that I never thought could come out of his mouth. No, that part is still there and in a way it protects me from being drawn into a "loving" situation which could explode again because he has damage going on in his brain and changes from one minute to the next . It is a wound that hasn't healed and I don't want to expose my "wound" to any further damage.
We have had a process of being with the wrong physicians, incorrect meds, etc. We finally found a good fit and for the moment all of the current protocol of meds are working. He is being so sweet and keeps wanting to make it up to me for what he thinks he did before that was ugly. Trouble is, he can't carry it through and then I get mad all over again, so I just have to let it be.
It isn't easy or maybe even possible to "just walk away" - it hurts so much. His bad episodes most of the time come out of the blue - I might be on one end of the house and he in another and he comes charging at me hollering something that doesn't make any sense. I do get out of his way and stay away from him, but I miss being his special sweetheart that he always spoiled and treated me like a queen.
What HAS helped is having this place to come to where I am cared for, understood and I can see that others have experienced the same situation. Before, I thought I was crazy. Validation, compassion and understanding go a LONG way. Thank you so much for giving us this chance to have a place where we can come to the "well and get a drink" and a little rest.
Joan, please know that we all are lifting you up during this time and are sending you oceans and oceans of love and understanding. Thank you for being YOU and sharing yourself with us.
My FIL was never violent. He was and is calm and co-operative. If my hb's progresses from MCI to AD, I hope he follows the same path of non-violence. Although it really gets upset with what is going on in Washington DC. Was really adamant that Steve Wozniak had to go from Dancing with the Stars. This is not normal - he never paid attention to politics in the past nor got involved in reality shows emotionally.
Joan, thank you for your blog today. What you are going through regarding the losses, (which I am sure is not the first time), I am working on. We have always done things together and had our dreams to travel and work. Now those things will change. We have decided to forgo participating in any research studies at this time to travel while we can.
I can see where in the early stages of AD it can bring couples closer, but there has to be a time to detach. I have started doing it but realize it is hurting him. His big problem is short term memory loss but he is surprising me with remembering conversations he just had. Could be the coconut oil and MCT oil even though we are just at probably a tablespoon a day at most. Who knows, but I will take what there is.
His constant about driving reminds me of my kids. They knew my triggers and used them to set me off. As our spouses go backwards in time, they know them and repeat what they probably did as children.
Thanks to everyone. I don't know what I would do without you.
To all who are worried about Sid's aggression - it is under control. The Risperdal is doing its job. I'm the one who went nuts yesterday from the constant needling and underlying anger he harbors. He didn't yell or scream or rage. I did. Thanks for giving me the green light for allowing myself to lose control.
Bille - Oh, for sure. Absolutely. The driving is pride, independence, freedom, masculinity. He feels he's been stripped of all of those things. I understand that more than he realizes. He will be miserable forever, because he will never accept it.
Divvi - You've made a good point. I don't think it's jealousy exactly. More like realization of loss. His ambitious, fulfilling, exciting work days are behind him, and mine are still unfolding. I am sure he feels as if he's being left in the dust. As a matter of fact, I know he does. He gets extremely angry and upset if it is even mentioned that I may have to go somewhere to do a speaking engagement. His immediate reaction is - "What about ME??? You're going to leave me stuck in the house!" He understands that our financial situation is critical, and if I'm going to be paid to give a speech, I need to give the speech. But he doesn't want to be left behind with nothing to do.
Bettyhere - You're never preachy. You know how much I appreciate your experience and advice.
To Everyone - I guess it will be as hard for me to break the bond as it is for him to accept the driving. MarilyninMD expressed it best - It would be easier if he were completely oblivious in an advanced state. But he goes back and forth between being irrational, unreasonable, confused, and a child brat, and his old sweet self. That is what makes for emotional trauma - going back and forth between dealing with the AD Devil and the husband I used to have who comes back sometimes. When my husband returns, I can't turn off my feelings for him.
And yes, I am physically exhausted. Came back from DC with a sinus infection. I have been listening to my body, and dropping everything to go to sleep when my body says - SLEEP. I will continue to do that until I feel better.
Joan-- For the sinus infection--in addition to rest, get yourself an ear syringe--use a cup of warm water, pinch of table salt, pinch of baking soda. Stand by a sink, squirt the mix up one nostril at a time. It will cleanse out the nasal passages and help break up the mucus. I've been doing this for years for prevention and to help when I have an occasional infection. It's cheaper than buying the saline spray and the syringe shoots it up further. This is sometimes called "nasal douching" and really works--especially if you do it after a steamy shower. Hope you're feeling better soon.
As a man, I never thought that I could cry so much after reading about everyone's posts. I am heartbroken, because I never realized that so many people had to deal with the same problems as mine. Phew...I am so powerless against this monster. I would gladly offer a kidney, a lung, liver, or even bone marrow if I knew someone would benefit and become cured. I would gladly offer part of my brain, if i thought it would cure someone....(the very tiny part that actually works)...the rest is almost new...hardly was used. I noticed that this disease is starting to claim 3 to 4 of my family menbers, and we are being swept into this dark black hole...our family is close, but we are all being affected, and all of us are on the front line doing battle....no casualties yet, but the wounds are getting serious and severe.....what a war we are waging. To all of you, don't give up!!!!!!!!!!!!!!!!!God never gives us more than what we can handle....so He must think more of our abilities as caregivers than we do....... My grandmother used to tell me...carry your cross...don't drag it.......
Joan - like everyone else, I feel bad your going thru this and can VERY much relate. When I first joined your site I read a particulary valuable piece of advise from a fellow member about keeping your cool and not getting mad at your spouse because they don't mean it and can't help it. Oh how I have tried.......and if I have to say so, I have far exceeded any patience level I ever thought I could attain. Yet, I have to confess, about every other month I just get so upset I find myself screaming at her then very shortly after I feel terrible about it. 2 wks ago while I was cleaning up one of her messes on the carpet in one bathroom she came in naked from waist down to tell me she made a mistake. ???? She couldn't tell me what so I asked her to show me. In the other bathroom, she made yet another mess!!!!! Both of them within 2' of the toilet. I am very proud that I did not get mad at her. I told her I appreciated that she told me & understand she didn't do it on purpose. (But what was she thinking?????) This stuff is going on while she has somehow got in her head that I have a girlfriend & just won't get off that kick. Her anger and aggression has returned, this time directed toward my son. She actually hit him in the face while he was driving the car! She is now relegated to the back seat all the time and I now have her on Lorazipam daily. I don't think too much about my DW being my spouse anymore but rather the person I promised I would take care of in sickness and in health. We all have our stories and none of them are pretty. Hang in there Joan. Thenneck
Gourdchipper and Marilyn, yes, of course I have info backing this up.
I will work on a response to you, but it will have to wait for a while. I am still in that online workshop study (four weeks to go) and have some other stuff going on.
Plus, it will take time to pull it all together. I think it is important not only to produce statistics, but information on why some patients exhibit these symptoms, and what can be done to prevent or "treat" them.
To quote an article from the Alzheimer's Research Forum (excellent organization):
"Many behavioral 'problems' in demented patients are not directly caused by cognitive decline, but instead may be attributed to other factors such as health, medication and physical and social environment. Coexisting illnesses, impaired vision or hearing, psychotropic medications, understimulation or overstimulation, lack of familiar cues in the environment and lack of meaningful activities and social relationships can causes a wide variety of responses in demented patients, including wandering, anxiety, paranoia, difficulty with personal care, incontinence, sleep difficulties and aggression."
Many doctors are unaware that the current AD meds (cholinesterase inhibitors and namenda) may prevent or delay the onset of behavioral problems. Somewhere I found a recent study that found that less than a third of AD patients are ever prescribed these medicines, and even those that receive them often are only on them for three months. So one might readily conclude that as more doctors become educated on the treatment of AD, the stats on behavioral problems will improve.
Also, there are many nonpharmacologic strategies for managing behavioral problems, which I've been looking into.
I have finisihed my journey with ALzheimers and am now on the other side of the misery that encompassed my dear sweet husband and myself. Since hhis death in Feb. of this year, I have had many obligations to fulfill mainly legal . Apparently when s omeone dies, we must now prove it to everyone ...I didn't relailize how complicated our lives are now and how much we are inv olved in the business of living.
I say the previous statements to remind those who are in the heat of the fray that this will cease some time in the future. For me i t was nine years of grieving, sadness, every day encountering some crisis or new legality. My life had not evolved as I had thought it would....I would cry for the life that was gone and realize that my husband could no longer be my partner in the everyday enjoyment of daily living.
I hope to somehow help you my dear f riends by telling you that you will survive this testing that you did not ask for or deserve. How you survive it is t he difference in accepting it and fighting against it. Somehow you will come to a point in your life that you will let go of t he dreams you had and accept that y o u are from now on a single person if not legally but realistically. If your husband had died physically you would have no choice in accepting that fact. But you do not have that reality, you are still responsible for a well loved stranger . In some way, in order for you to be able to have a modicum of normal life you will need to develop a new reality. You are loyal to your love that you remember and feel that in searching for a new life is somehow a betrayal of your love but dear one, you still have your precious remembrances of that love . I now as I have said before am now recovering those memories of my love as he was and the years of enduring t he pain of separation are fading away.
I know that having to care for your spouse in your home with you as the primary caregiver is much more difficult than if he were being cared for by others. Your spouse is always a reminder of what has been lost and his/her rapidly deteriorating personality is devastating to relate to. There may come a time that you realize to save yourself you will need to let others be involved in the caregiving. I do hope that my friends here will accept that I write this in the hope I can help you with a way of relieving your pain and and give you some hope that "this too shall pass" .
Dear sweet ((Joan)) Your blog was painful for me to read :( you took me back to Lynn and I about 5 years ago.... The rages are a large part of the hell some of us here share. But, the larger loss is all of those you mentioned. You mourn the loss of your spouse, your everything, every single day. Year by year, day by day, minute by excruciating minute, our loved ones are stolen from us - bit by precious bit. Lost forever.
It isn't healthy to try to deal with such immeasurable loss, every day of our lives - for countless years upon years. When I read you lost your "cool" I actually smiled.. thinking "You go girl!!!!" Let the poison that is eating you away inside out. He isn't going to remember that you let loose once in how many years? He isn't hurt by this, odds are he doesn't even remember! PLEASE CUT YOURSELF SOME SLACK!!!! Every now and again, it is GOOD to let that volcano erupt for your own sanity!
I finally decided the world had enough Saints, and I could stop my roll of martyr. But, it took me almost dying to do so!!! I tried to be the best caregiver I could be, always trying to give at least 110%. WHAT did my sacrifice change?? NOTHING!!! We are in the end stages now. Lynn is down to 102 pounds. There is NOTHING I can do to stop AD from ravaging my husband. Nothing. Self sacrificing ourselves, is not going to do one damn thing to help our loved ones.
We are warriors, Heroes. We do not have to let this disease claim us too. I in fact refuse to let it. I am absolutely torn up, heartbroken… over what is happening to my beloved husband. It has the power to destroy me. Only I have the power to make sure it DOESN'T. We all have that power. Take care of yourselves!!!!!!!!!!!! Your sacrifices are not going to be remembered. Who is going to care for your loved one when you have a stroke? Or a nervous breakdown?
Have I detached? In a way I guess I had to. I was going mad with grief. Literally. I am trying to deal with my Dad's suicide last March, and trying to deal with the daily grief of losing my husband, being consumed in that grief every single day of my life. Not a pretty picture I assure you. It wasn't the first TIA stroke, nor the second, the third, or even the 9th, that made me see I had to place him............. it was only when my mind came as close to breaking as my body had. Only after my doctor told me at 41, I could be dead within the year if I didn't place him.
It is hard for me to have Lynn in a nursing home. Harder than anything I have ever done. Harder than even my worst of nightmares about when and if this day would come. That first week he was there, was a living hell. I truly prayed and prayed that God would just take us both. Six weeks later, and I am thanking God for unanswered prayers!!!!
It is still hard. I hate this wasting stage. So very hard to witness. But, he HAS adjusted. Just last week when I went in to see him, he asked me what took me so long to get home? He isn't doing any better there than he was at home. But he has a WHOLE STAFF OF TRAINED PEOPLE caring for him 24/7. For the first time in so many years, I am at peace. I know he is safe!!!! Now ... now I am not his enemy. Now, he loves my company. He wants to hold my hand and cuddle!!! In some respects, this is harder, because now I have a part of him back I never want to let go!! But such a gift, a precious gift!! And one I know, I would not have had if I kept him home.
I go see him every single day. But I can leave! We all need time for our minds, spirit and soul to heal! This just can not happen when you are a 24/7 caregiver. It just can't!!! I am sleeping!!! I am getting my physical tests done. I am getting healthy! If it isn't time yet for a nursing home, truly, please consider getting more in home care to help you. ALL OF YOU. ((Hugs))
My two cents on if this disease can bring couples closer... are you out of your ever loving mind? HOW can that be possible!!?? Maybe in the first few years, when the short term memory isn't nil to zero. But later, when there is nothing left but a shell of the person you married? Hell NO!!! I fail to see how a man you have loved all your life, starts thinking you are his mom, can make you a closer couple!! ACCCK!!!
Thank you for finally sharing with us, Nikki. It's good for you and good for us. So glad he is adjusting and you're getting the medical help you so badly needed.
((Joyful)) we were posting at the same time, so I missed your wonderful heartfelt post. Thank you for sharing with us ((HUGS)) I couldn't agree with this statement more.... "How you survive it is the difference in accepting it and fighting against it."
It took me so damn long to reach this understanding. But, it is the truth. We have no power to change what AD is doing to our loved ones. Fighting and fighting, is not going to do one damn thing to stop it.
My heart is warmed that you are now recovering your happy memories and the hell of AD is relinquishing its hold on you. Wishing you nothing but MORE comfort and peace. Nikki
((Dazed)), thank you.. I just wasn't able to post through the sadness before. Sure have missed you all!!!! ((Hugs))
Joan, I've read through this thread and you can see lots of different ways of SAYING its time to take better care of Joan! Its odd that we, who are 'trained' in various professions like yours and mine..as a counselor.. sometimes are too close to be objective when it comes to our own personal situations. I've so often felt that I needed MORE training.. where is the preparation for THIS awful disease when its not someone else's loved one but our OWN and we're on duty 24/7 and nearly 365? The only place I've found is right here, Joan. RIGHT HERE. Thanks to you. Disconnecting is a saving grace, I think. Even so, we can be all disconnected and still be completely undone by some things and without the ability to get AWAY from it..we won't survive. Too often we don't follow the advice we'd so easily offer othes. Just know I'm thinking about you today.
Judy--You are so right about the lack of preparation and training for this job we have. I have thought that so many times--why can't the medical profession, government, etc. take on this challenge and devise a way for dementia caregivers to get the information they need. I believe that we who participate in this website and use it as a resource are the minority--most families don't have any idea of what they are up against and just fly by the seat of their pants, to the detriment of everyone involved.
No, we are not prepared for the onset of this disease, ever! Some of us see it coming on slowly over many years and adjust slowly. Some of us see onset vertually overnight. It must be most terrible to adjust then. I think that we go along trying to do the best we can in every way, educating ourselves, getting advise from medical and law professionals. We try to handle every aspect of our life and our LO's. We are stretched too thin. Vulnerable....is what we become, to what life throws at us. How do you cope? Become detached? Really? Some might be able to....I for one feel that I am caught in this thing....wanting to disconect, but not able to do so... as some are on the firing line every minute of the day. There is a named syndrome for this, our vets get it coming home from combat! This is after all, A WAR!
Yes, very well put, MMarshall. It's called Post Traumatic Syndrome. Soldiers get it from seeing their buddies die on the field. We get it by seeing our LO's dying a slow painful death and there's nothing we can do about it.
Reading over all your comments make me understand more why I tend to withdraw instead of always making the most of our time as everyone wants to tell you to do. I think it is a growing part of ourselves in dealing with this disease and the all the time care that we are expected to do, want to do, don't want to do, etc... It is a whirlwind of emotions that are good at times and devastating at others. Too, its not feeling appreciated for the sacrifices and it being so physicially and emotionally demanding. Too, just knowing the outcome is enough to put us all in a state of depression . It takes a long time to not care what people think when you go in and he confronts people with gibberish or telling them they dont remember him,. do they ? and they have never seen him before ever! To go somewhere to eat and it looks like a pig ate there. But , we go on and deal with it after all it is just one more thing! Thank you joyful for sharing with us though you are out of the grip of this disease that held you so long! We do appreciate your courage and encouragment. Do you find it hard after being confined by the disease so long to find yourself again?? At times I wonder what life I will have left after it is over.
My dear decblu: I am glad you are encouraged by my sharing my experiences those long years of dealing with Alzheimers. You asked if It is hard after being confined by the diseasee to find myself again. I did not find myself again because I couldn't if I had wanted to....I am a different person than I was in the pre- Alzheimer days some differences due to deliberate struggles to adapt and other differernces resulted from my reactions to responsi lities thrust upon me.
In the years preceding my husband's disease, he was the one to take care of our finances, I didn't even want to write a check; He took care of our cars and I never had to put gas in them; He saw to the physical upkeep of our house including t he grounds '. in summary, he was the decision maker, and I could rest easy knowing he was handling the daily responsibilities . We loved each other very much and he was my best friend. We really didn't need other people to be complete; we only needed each other.
In the ensuing years (9) of first caring for him at home, then in 3 NH's , I had to assume the responsibilities of our lives, had to become knowledgable as the advocate f or my h usband, and mainly had to learn to be independent and not lean on others. I had to find friends to help me become part of the community by myelf. i am not as opinionated as my judgmental self is gone. I no longer am sure of right and wrong. I am a different person and II hope a more mature emotionally one. So dear friend, I am no l onger t hat other self but am trying to be the self reliante, contented person that my husbamd and family would be proud of.
joyful and I share some common attributes. Both our spouses passed away in Feb 2009 and both are buried in the same cemetery. On being a different person, non judgemental, not sure of right and wrong, emotionally more mature: these are certainly changes in me since pre-AD days. When I first came on this site, I said Vietnam was good training for caregiving. Now that the fight is over, it's like coming home from Vietnam. Switching from only caring about what is happening right now and future planning only involves what is going to happen in the next 15 minutes, to there are a thousand things that can be done today, but none that must be done today. We are not prepared for it to start and we are not prepared for it to end. Somewhere in the middle we became so engaged in the day to day, that caregiver is the only life we know or can remember. When it is over, you can't just turn it off. It's one more thing that we cannot control. I feel like I cheated somehow because my DW and I only spent 3-1/2 years in the journey. I am sad for those of you at the beginning and frightened of what's to come. I ache for those who can no longer remember anything other that being the caregiver. Someday I will stop reading messages on this site, but not today. You are the people that got me through it. You are the people that gave me strength to go one more day, everyday.
Joyful: I am sorry to hear about your DH's leaving & hope you stay along with those of us who have also 'finished' this sad journey. Please accept my sympathy & understanding. I especially want to seethe with you about all the complex paperwork--aaawwggghh! I thought we had it all in order--we are not Bill Gates! I know the accountant was only doing his job, but good grief, why does the govt want this paper & that paper--and who saves all these things? Get the house appraised & change this name & send another death certificate because some company has people in dept 'A' who don't seem to speak in those in dept 'B'. And my health insurance got cancelled because the bank made a mistake and neither the bank nor the ins co were able to call each other because the people I called to get it straightened out only had incoming-call phones--they couldn't call each other!
And dking, I am sorry too about your DW and your loss. No one begrudges that you 'only spent' 3-1/2 yrs on this journey. You will adjust. Nature takes care of us, we move on whether we want to or not. New things and new people enter our lives, new memories are formed and our old life begins to take its proper perspective in our life--it just doesn't dominate our every moment. It has been a long time since my DH left and because I write a column about AD & stay here, it may seem like I am obsessed, but I do have a good life now, I even have a gentleman friend. In the early 90's I did not have a computer, no one saw what I was going thru--even many docs--altho one or two did, thankfully. You talk about Vietnam (DH was in Korea) and I used to feel like I was on the roof in the middle of a forest fire. Sparks were landing here and there & I was rushing to put them out only to see others come flying in.
Like both of you--and others, most of us get thru it and we are better for it--it's a hard way to learn--damn hard! But it is important for those of us who have come thru it to be around for the others, to extend a supporting hand as they emerge to the other side. Who else understands?