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 behavior changes the hardest; new member 
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Post behavior changes the hardest; new member
Hello to all members,
I am a 50 year old wife (33 yrs Sweethearts, 28 yrs married, my Best Friend) of an almost 52 year old Beloved Husband, dx'd (at Mayo, Dr. Boeve, incredible luck, as we were there for a problem of mine, he was a "walk in" to use my time, clarify "neurodegenerative disease (dementia w/ Parkinsonism)."
LBD had been our terrible secret, problem for so many years.

I just want to reiterate how incredibly grateful I am to have been given the name of this site. I post here particularly because, though I have read several helpful things w/in last 24 hours, I am past the mystery of why (by dx), but I just need to find tips to help me when he changes so drastically, (some of you must know it's terribly mean, cruel); when "Showtime" leaves me completely disbelieved by parents, sometimes our own Daughters. I wish I knew how to be the kind, understanding person I believe I've been in the past, how to catch myself, when, isolated, I start to be mean in return, or just am so hurt I do not know what to do. The therapists do not get this illness, and it's been difficult even convincing them (until decline lately)that knowing what to do, how to react to unbelievable behaviors (in past)is as hard as it is. He is the Love of my Life, deserves the *best*. I want to be the best I can be.
Thank you for listening; I feel incredible guilt even writing that, as four years ago, I knew something was wrong, but I would never have believed I had such angry reactions w/in myself.
Good Luck to All.
WifeLiz


Fri Feb 02, 2007 3:26 pm
Post 
So "this doesn't work" meant he was having trouble urinating.

Dear Jon,
Welcome to the LBD forums, what you have stated above is something we all need to be able to work out the patient can no longer put their thoughts together and we have to do this I have stated this many times prior we have to think for them and it is not an easy task! Good luck with your Dad!


Fri Feb 02, 2007 4:44 pm
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Hi Liz,
I would like to welcome you the LBD forums also, sad that you need to be here but I am glad you found us.Sad with your Husbands DX and that you are both going through this in your lives, I do understand what you are expressing here, I know I lived it , it is we the ones living with this are the only ones that truely know what it is like, my husband also would have this showtime when people were around and of course he did get to the point of not being able to do that anymore but it was many yrs that i endured the craziness. My best suggestion to you is# Have your daughters if they are willing to do some research on LBD, I can send you infomation if you like that will help others reading it and as far as the moods your husband goes through your best defense is trying to redirect his thinking when he is like this, sometimes it works other times it doesn't but it is worth a shot in my opinion, Please write us again so we can all help one another!


Fri Feb 02, 2007 5:01 pm

Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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Hi Liz:

Yes it's very difficult to see the changes in your husband and not be believed by your other family members. I noticed my Dad's escalating problems 2 years before my brothers and sisters and although they were never critical, I could plainly see they didn't believe the problem was serious. It wasn't until my brother invited my father for an extended visit at their summer home that they realized just how serious the problem was. Having my concerns validated was good, but I still felt a degree of resentment that my observations had been ignored for so long.
I think that most of us Caregivers are "fixers" - otherwise we wouldn't take on the responsibility - and it is frustrating when we realize that some problems just can't be fixed. All you can do is be as supportive as possible and try to remember that it is the DISEASE and not the man that is making your life so difficult.
Feel free to rant here whenever the mood strikes - we all understand, we all empathise and we are all here for each other.

_________________
"Im pedalling as fast as I can!"


Fri Feb 02, 2007 5:21 pm
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Post Thank you re tips on Behavioral Issues
Dearest Irene and fins,
Thank you so very much for writing. It is, of course, so late, that I can barely think myself. My Husband decided all of a sudden that he should, I suppose, be disparaging of this Forum, though when informed of it, he was even excited as Dr. Boeve, his Doctor, is involved. Tonight I had to spend a great deal of time reminding him that this is a *good* place.

Redirecting is a great idea; I think I read one of your other posts on that; and the validation about Family not trusting those of us who spend the most time w/ the LBD patient (Showtime, having to spend more than a quick visit) means the world. Thank you. I look forward to further educating myself, and hope very much to offer help or some kinds of hope...to volunteer, as well. I would love any info., Irene, but how might I get it? And how do I ever thank you all enough?! Take care.
Love Always, WifeLiz


Sat Feb 03, 2007 1:55 am

Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
Post 
wow i would get so fustrated with Jackie(my mother in law) and try a make her do things that i "knew" she could do. Then one day it all got straight in my head that she could no longer do them and i was at peace with that and now just do it myself. my fustration level has come down alot.
The entire "show time" I would be so torn about her other children visiting Jackie part of me wanted them to see the real JAckie the lbd jackie, part of me wanted Jackie to be ON so they could enjoy their visit and her. Now i also don't worry so much about it any more, they get what they get. I try and adjust sleeping pills a little so she might be awake and a little more alert but other then that I just look foward to having a little extra support. And I go on a date with my husband while they are here to care for mom.

_________________
Phyllis
taking care of Jackie 74 years old mother -in-law


Sun Feb 04, 2007 12:22 pm
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Post Thank you again
Dear Phyllis,
Your post was very calming, and I will go back often to remind myself. Sometimes I have reached a calm point of acceptance, living calmly w/ his changes (though sadder than I ever I am mad, I'm realizing) and also with everyone denying. Then he is better, I am thrilled, pray it will stay. Then it gets even worse (he has some sinus infections, chronic, and GI problems found in endoscopy and colonoscopy. (I also have to watch his health as well) . I'm hoping they are cause of his getting worse at present. Dr. Boeve himself will not (or maybe will?!) Believe the changes since last Fall. I am so frightened this means it will be fast.
But again, thank you. Your acceptance, as in all situations, is really all we can do. Except to remain informed. I know I got this name at Mayo (LBDA), but was in a fog, had been there a month and half for myself. And then Holidays, harder and sadder now. Only when a beloved pet died did a vet asst. recognize her Father's sx's, remind me of there being resources.
Stress has dulled my mind!
Take care.
Love Always, WifeLiz


Mon Feb 05, 2007 2:05 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
Post 
Liz:

The wild swings in cognition and emotion are the most frustrating part for me, too. The F-I-Law is usually the most even-tempered guy I know - he gets frustrated by his inability to recall nouns, but overall is pleasant and easy to get along with.

When things start to deteriorate, everything changes - he denies he takes medication (a huge problem when the key to keeping him on the straight-and-level is regular medication dosing at fixed times), he denies that he's ever met me or his son before, he throws things, he threatens to shove his cane up caregiver's backsides, etc.

When everything gets regulated again, he's back to being sweet adorable old guy that everybody likes. It makes it incredibly frustrating, because they don't see how anyone so kind and calm could possibly break drinking glasses by throwing them at us, destroy a (heavy) glass lampshade, beat an AT&T phone into bits or kick and hit at caregivers and loved ones.

I wish I had some specific coping strategies that might work for you; I know that I just take a very emotionally detached position and repeat to myself, "it's the disease", over and over again in my head as I just continue to do what needs to be done. It's now virtually impossible for him to provoke even a mildly sarcastic comment from me (which people who know me would be amazed by - I can say "thank you" to someone making change for me in a way that sounds contemptuous). If he throws water, I hand him a towel and point out that he spilled water and it needs to be dried up. If he refuses to take his pills, I try again in 15 minutes. If it seems like he's ignoring me, I wait 15 seconds and repeat what I'm saying, with no change in inflection. Jon does not have the same ability to find a detached state - probably because it's his father we're dealing with, and tends to take it a lot more personally. I consider every day a new day and don't bring 50 years of history into the equation, because it's just no longer productive.

I'm a person, by nature, who tends to want to "fix" things. See problem, analyze possible solutions, try the most likely/lowest-risk-of-problems fix, measure results, lather, rinse, repeat. Dealing with a chronic progressive illness is not my forte. I've had to adopt a few other strategies over time.

The biggest one is the "therapuetic lie" - when the FIL gets suspicious about the pills, I lie. Shamelessly. "This one is for your shoulder, this one is for your back, this one is for your headaches". I have no moral objection to blatantly fabricating what a given pill is or what it does. Dad is not aware of everything he takes every day - 24 agents, 38 pills. We have made a "command decision" that we just insert the new ones into the pill cups or remove them by the Dr's order and we go on. There's no "middle-ground" - all the pills in the cups are yours and they've been prescribed by your doctors. We don't negotiate with terrorists. ;0)

We will also lie boldly about things like whose idea a particular doctor's appointment was, the origin of new items in his apartment, and if we thought it was beneficial, the color of the sky. We've lied about why the liquor cabinet hasn't gotten refilled, we've lied about why the floor was wet and we've lied about hundreds if not thousands of other little minutiae. We will continue to do so. How we sleep at night is that, through it all, we know in our heart of hearts that we are giving comfort to someone who is trying to navigate a complex world with a disease that has changed how they see their environment, how they make sense of it all and how they communicate to others. We are making his time on earth as simple and easily-understood as possible through plausible explanations that he can still grasp. This is, in fact, a good thing. We create an environment with reduced conflict (both interpersonal and in the sense of cognitive dissonance) and everyone moves about their lives in comfort.

On another practical level, we always (ALWAYS) have a pre-visit communication with dad's doctors where we speak utterly candidly about what has been going on and our concerns. Some of our care partners are best reached by email, some prefer to get a phone message that they can address with a return call - overall, though, a fax works *REALLY* well. If you don't have a fax machine, sign up with one of the email-to-fax services because doctor's offices *LOVE* faxes - there's a tangible piece of paper to put in a chart. This lets them review things on their time schedule with no pressure to immediately reply and lets us say things that we wouldn't want to say in front of dad, either to avoid upsetting him or to avoid getting the "that's not true" indignant response. Our doctors are all fantastic, empathic communicators (with the possible exception of the internist), and respond sensitively, letting them broach the topics as they wish.

You might make a list of the specific problems/deficits that are most bothersome/troubling and ask your care partners to come up with specific suggestions that may help. For example, if someone's having trouble reading (alexia), it might be helpful to include pictures or drawings on their memory aids so they can use another pathway. If physical problems are an issue, a PT may have some time-tested method that improves a specific task (like getting out of a chair). Neuropsychology, physical therapy, occupational therapy and a physical medicine/rehab (physiatrist) specialist can all be invaluable. We have found that even the simplest things like raising the sofa 4" have made life better for dad.

Finally, the most important thing I have found is to be utterly flexible with your loved one and utterly rigid with outside service providers. We no longer take appointments before 11 AM, we no longer allow all four homecare specialties on the same day (non-medical, nurse, PT and OT), we do not make multiple med changes simultaneously unless it's for an urgent concern like an infection - any of these things can set dad off and it's clear that none of them directly benefit him. If Dad doesn't feel like eating breakfast foods at breakfast time, he can have something savory. If he wants ice cream at 2 in the afternoon, good for him. If he's having a low-cognition day, we call and cancel with the dentist. In parenting theory, I think this would be called "spoiling" - in our case, we justify it as making life as comfortable as possible for a scared 84 year old man - there's just no "good reason" to make a big deal out of it. Right now, he is the center of our universe, he's earned a certain degree of fawning attention and deference by living into his ninth decade on the planet, and the world can...adapt..to him and his needs.

I bake for recreation. Not only does an hour in the kitchen keep me sane, it actually works out nicely, because it means we are known by the care providers as the guys who show up with a bundt cake or a tray of cookies so big it won't fit through the door or some cupcakes, either at our appointments or "just because" - there's no quid pro quo - there's no "if you work me in, I'll bring pie", but it certainly does help ensure that their opinion of us is "nice guys with pleasant old guy and baked goods" not "lousy hypervigilant ungrateful kids with cranky old dude".

Watching these declines can be really tough - we've been lucky that we've been able to address a number of problems and "raise the average" so that his good days are really good, his bad days don't require a trip to the ER and the average is "tolerable".

Eric


Mon Feb 05, 2007 3:35 pm
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Joined: Fri Jan 26, 2007 2:29 pm
Posts: 57
Location: Wake Forest, NC
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Eric. wow thats all I can say for a minute, How on earth do you get him to take all those pills?? We can't get my mother-in-law to swallow 6. With my mother -in law it helps if I tell her what they are for then she remembers, she still may not swallow them sometimes she will chew them. We are now crushing them(some she still has to takes whole). Since we can not understand most of what JAckie says we always answer her in short little response(i'll take care of it , don't worry,ect) But I do beleive that "LIEING" is the best we could do for our loved ones. Anythng more would be I beleive a waste of our time. Because they don't understand reason any more. I will give JAckie anything she wants when ever she wants for the same reason they deserve it. we don't have to deal with the mood swing Jakie just sleeps or won't talk if something in her world is not right.
Stay strong,

_________________
Phyllis
taking care of Jackie 74 years old mother -in-law


Mon Feb 05, 2007 7:25 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Phyllis:

Yeah, um, some days, it seems like a challenge.

The first key is that he doesn't have many swallowing challenges. In fact, he has this completely bizarre habit (and always has) of putting all the pills in his mouth, dry, and then drinking the water. So mechanically, we don't have too much trouble.

The second key is that the three times a day he takes pills, there's not more than a half a fluid ounce of tablets to deal with, so it's really not that bad. We look for the tiniest forms of the agents he takes where there's a choice (like in generics), and we're very conscious of size. A great example of this is Vitamin D. The difference the brand he gets and the brand I take myself is probably 4 or 5 *times*. Same drug, same form, same dose, but 80% smaller tablets by looking for a different brand.

The third key is we look for things that are slippery. Liqui-Gels are better than capsules which are better than enteric-coated things, which are better than caplets which are better than film-coated tablets which are better than non-filmed tablets. In things like his blood pressure medication, we try to find the "slipperiest" forms - triamterene/HCTZ comes in

Fourth key - we break/cut things in half. This is especially important for some of the vitamin supplements, which are usually insanely huge.

Fifth key - none of it tastes all that bad. The other things build to this - usually, anything from the caplets on up isn't going to taste at all, even if they linger in the mouth for a bit. If there's a question, just *licking* one of the tablets of most pharmaceuticals, then rinsing and spitting, isn't going to hurt you (big exceptions: blood thinners, chemotherapy drugs, hormonals, nitroglycerin) so you might see if there's something horrible-tasting in there. Ask your pharmacist if the drug is known for having an unpleasant taste.

Sixth: alternate dosage forms. An example is Exelon, which should soon be available as a patch. Some drugs are available as reasonably pleasant-tasting liquids. One very helpful choice for us is the "orally dissolving tablet" - Zydis being one trademark for such. Dad's atypical is available that way, and we keep them on-hand for "emergencies" - we just have to get the little lemon-flavored tablet in his mouth, and moisture takes care of the rest. It's also easily pulverized to slip into an Ensure - much easier than conventional tablets.

Finally - we have the best pharmacists we could imagine. Our "normal" pharmacist covers all the Rx stuff, and he's experienced, super-helpful and totally understanding of the challenges we face. In addition, we have a compounding pharmacist. If you're not familiar with compounding pharmacy, this would be a *great* time to find one; they are pharmacists that specialize in preparing medications to order from the basic drug ingredients, adding their own fillers and flavors and delivery systems. One example is the high-dose vitamin B therapy that dad gets - using the best supplements available, it would be 7 tablets a day - with compounding pharmacy, it's one *tiny* (cooked-grain-of-rice-sized) capsule a day. They can often make lozenges, gummy bears, suckers, creams, liquid forms, suppositories - all sorts of ways to get drugs into people, even when Big Pharma hasn't seen the merits of marketing a formula like that. They can also take and combine multiple tablets into a single capsule by pulverizing them and re-packaging the resulting dust into a capsule. They are an invaluable resource, I could not do this without them. I urge you to talk to a few local ones and work with them to build solutions that work to solve your problems.

Is your MIL hard to understand because it's "word salad", or because the words themselves are garbled? We had a horrible time with dad because one of the drugs was causing incredible dry mouth. I think Jon has written here about using sugar-free LifeSavers to dramatically improve his speech. Any sugar-free candy with sweeteners ending in -tol or hydrogenated starch hydrolysate can really improve salivary production and make speech a lot more understandable (in dad's case, from "slurring like stroke-in-progress" to "completely understandable"). His dentist has been a great resource.

We get the "won't talk" thing too when something goes wrong - that's when he won't take the pills either, so we "triage" them and get the most important one (Zyprexa) in *first*, and then try again in an hour with the rest. It actually seems to work.

Dirty Tricks: if the tablet can be safely chewed, a bite-size Snickers bar is an excellent hiding place, because the nuts mimic the texture of the pills and the nougat/caramel is receptive to being pushed aside. I feel like the weirdo down the street putting drugs in the Halloween candy, but it totally works.

Eric, The Pragmatic Caregiver
(edited to change Reminyl to Exelon - I swear, confusion is contagious)


Mon Feb 05, 2007 8:37 pm
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Post With Greatest Gratitude
Dearest Phyllis and Eric,
I wanted to pass along overdue thanks to you and others for such helpful ideas.

As "imposed" isolation has lessened, and have been able to read here, along w/ upcoming LBDA Support Group, I feel so much more myself, stopping reversion into shy, quiet in public, longwinded on posts. Sorry my Blackberry doesn't allow an embarrassed face there.

Using all the incredibly helpful suggestions has made life calmer, easier; though I know this will change, again and again.

Just seeing me here, DH (dear Husband, who fears being "known" or googled, good and paranoid reasons) has become more comfortable if I'm w/ my best girlfriend (whose Father is in daycare for a hydrocephalus and other type dementia).

Your suggestions, even if for something different, can be "transferred" to our problems. Medicine, I don't know. It's always remembering, reminding, but it's also (much is) a *long* discussion. Tiring. My problem w/ watching his caloric intake so as to not drop 10 lbs. (No GI problem re that) is a big one. Like a fussy child. Sadly I can almost, from being a Mother, name age behaviors to myself.

Saying it's the Disease over and over, like mantra helps. I don't know, but believe some things would be so much easier if he were a Parent. Firmness, etc. was no problem for me w/ MIL and open heart surgery recently, and my feelings were never hurt. It is a *big* adjustment w/ a Husband, and one to whom I've always deferred.

The compound pharmacist is a wholly new concept for me, so thank you! Hobbies are/ will work well:

We are opening large carton of Family photos from beginning, plan to arrange, all tasks that could help him if he stays w/ it.

My best idea so far, I humbly hope (!) will be so helpful. I've taken an unused part of condo, turned into Music Room, tranquil! Comes w/ even small fountain, Asian look from his love and studies, our travels as young couple. Lights can be Daylight or dimmed, a few CDs are relaxation or meditation. He was, from age 13 (early deep voice) a disc jockey before professional life: so this is special. Even strumming a guitar calms his tremoring rt hand. Less fatigue. But very comfortable chairs make napping O.K. too.

In our bedroom, far too long , California Closets took entire back of long wall, turned into very adequate closet/ drawer space. The small (but really in real life! bigger walk in closet) is now an office, complete w/ desk, bookshelves, the necessary Fax and Printer w/ computer. He can, if he desires, try to work from phone out of state. Just to give him all that is familiar and desired.

I hope any of my ideas, all (except Calif. Closets, but they have competition) are helpful, maybe, and were done very inexpensively. Just rearranging, shelving, etc.

Other problems I will save for Support group or watch to see here: two yrs ago, neuro said no driving. Yesterday he was almost run down by parking lot car. Needless to say, I'm so scared to leave him, as he is *convinved* he is capable of everything. Taking away keys just is unimaginable to me, as I've always deferred to him.

Oh yes, re speech, he's getting his hearing tested *since I got mine tested*, but his words are quiet, mumbled to me often. To others he annunciates, uses inflection in tone, "makes" effort. I have to see this as his feeling safe w/ me.

I hope I've helped someone. To know I can volunteer for this cause has awakened me from a depression, really. I'm hoping his case will be slow; I'm sorry I cannot help later stage families. But I'll do my best.

Thank you again.


Wed Feb 07, 2007 2:47 pm

Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
Post 
Dear Liz, I too have posted about "show time", my husband was able to pull out for showtime with my sons. Since I had to put him in a home, one of my sons (48) will not speak to me, he hasn't since Sept. when he went into the home. My heart goes out to you because I know how you feel, you not only lose your loved one patient, you also lose the loved ones who donot believe that the patient has anything wrong.

I have a question for anyone that might be of help. My husband as started refering to me as she, when he talks to me. Has anyone experienced this? Is it a pre-requisit of him forgetting who I am. He has always knows me but today he said that he didn't think he has met my husband, and refered to me, (about me) as She. I am just grasping at what is to happen next.

Take care and hang in there, we all know what you are going through.
Elaine

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Husband 78, In Late Stages of LBD


Sat Feb 10, 2007 3:59 pm
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Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Elaine:

We have gone through that exact phenomenon with Cal. It waxes and wanes; he usually knows who I am (and I've only been in the picture six years), but he's a little fuzzy at times on Jon, his son.

I find that when I enter his apartment or when I call on the phone, I need to avoid saying "it's just me" - I go with "Hi Cal, it's Eric" as I open the door. I expect nothing - if he's having a great day, I roll with it. If he's a trifle confused, I try to add subtle non-emotionally-involved reminders. An example would be, if I call down to the front desk for something, I'll say "Hi, this is Eric, Cal-in-apartment-13's son-in-law", even if they know darned good and well who I am. It's respectful of his dignity and he can continue to "fake it" convincingly if need be.

Eric

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Feb 10, 2007 4:58 pm
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Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
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Thank You Eric, for your reply. I completely agree with you, they have earned and deserve respect.

Today I took my husband out for lunch, I had to cut his food for him, I did it quietly and he took it quietly, that was a first for both of us. Each phase of this horrible disease is unbelievably hard to accept.

I know that LBD patients, probably do not just stop, remembering their loved ones, but the refering to me as "she", was strange. I guess that is just his way of me fading away from him. It may be entirely different tomorrow, we never know.
Thanks again,
Elaine

_________________
Husband 78, In Late Stages of LBD


Sat Feb 10, 2007 8:19 pm
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Joined: Tue Feb 27, 2007 12:15 pm
Posts: 11
Location: MD
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Liz,

I am fairly new to this site, but can totally identify with you. My husband is 48; we were married 6 years ago. He has been recently diagnosed with LBD, living with other diagnoses for the past year and a half, but it is obvious many of these symptoms have been around even before our marriage. It's like the lobster in the pot of cool water, turned up ever so slightly over time. The behavior is evidenced really only by me, and I seem to be the recipient of all the agitation. He has become even more withdrawn, and would isolate me from my friends further if he could. The doctors don't see how depressed he is; he can hide it well, and he is in such denial over this disease. He doesn't want me on this site, or in support groups, and I'm forbidden from telling anyone (more isolation). It's hard to say it's the disease when it's only directed at me. I try very hard not to engage him, so sometimes I have to lie as well. What's hard is that he says whatever cruel thing he wants to say, and I have to hold back . So I internalize my anger, which doesn't feel great. It's not unlike being an abused wife, I suppose. I love him and will stick by him, but he is definitely not the person I married 6 years ago; and I don't have the history with him that you have. Cherish that; you are lucky in that respect.
Wishing you peace and serenity.

_________________
Beth from Maryland


Wed Mar 07, 2007 11:50 pm
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