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 behavior changes the hardest; new member 
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Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
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Dear Liz,
My heart goes out to you because I know what you are going through. I have history with my husband, BUT, that doesn't change things from your situation. I went through exactly the same thing for years. My husband wasn't diagnosed until 6 years ago, I know now that he had it for years but I didn't know what was happening to him. He did exactly the same things to me, and became very controlling. I was hurt and wanted to hurt back until I found that he was sick. From that day on, like you, I had to be very patient and I was, knowing that he couldn't help what he did to me. He is now in a nursing home, since Sept. He still knows me, or knows that he should know me but makes no sense. I think it is different to have your solemate with this disease, than a parent, in that they are your whole life, whereas, you love your parents dearly, you have left them and cling to your husband. Please hang in there and know there are other people in the same situation. Elaine (attilla)

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Husband 78, In Late Stages of LBD


Thu Mar 08, 2007 10:00 am
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Hi Attilla,
You are so right in saying it is different with a spouse! We are conditioned to growing up with the fact that Mom and Dad won't be around forever, but for me I never gave it a thought when it came to my Husband, I thought we would live out our lives together and that was it, We also didn't have a DX for many yrs eventho I knew deep down something was very wrong early on! We would have the control issues , they came and went and each time I thought this must be some sort of midlife crisis, the issues took over our lives and I was willing to do just about anything to keep peace in our home and it meant me giving up our social life too! We stopped attending many family things because Jim could'nt deal with the comotion at them, I mean I would become unglued if the dog barked or the door bell rang or even the phone, because these were the things that agitated him the most........Once he was Dx'ed and I learned what was happening to him I could deal with it better but the sad thing is by that time he was so advanced into the illness.
I often say this disease ripped our family to shreds, Jim is gone now and we (The Family) have to still live it, the guilt of the not knowing all those yrs! Thats the hard part........... :(


Thu Mar 08, 2007 10:15 am
Post To Beth from MD, From Liz
Dearest Beth,
(And All kind enough to have been here for me from start),
My heart is breaking for you, and I have *so much* I want to say to you: most of all, about the isolation. It *will* do you in; I had just about, despite therapy, gone "looney" myself. A better way to say it is that a side effect was really, at 50, losing my social skills, graces, etc., besides not liking who I had become *at all*.

Right now one of our Daughters is in a health situation that I *pray* will lead to only good answers, none bad. I am praying by the end of next week I'll know more, be "functional," as if the serious outcome were to be the case, I wouldn't know how to live. Another Daughter veryn very newly pregnant keeps me going in my mind. Of course my DH (Husband) regressed from any progress, or just not progressing *quite* as much, w/ this stress. And you know who it's being taken out on. We always were together on everything, caring, helping each other through.
SO, I *will* write w/ anything I can tell you (lots), but in the meantime: 1) Please, please apply to join the yahoo group for lbd caring spouses, where information, *totally* private matters as well (your Husband shouldn't object, as it's very, very private, closed); and 2) please, please w/ help of this group, the yahoo group and/or a therapist if you can, get out of isolation *every day* somehow. My health, poor from autoimmunes and other long standing issues, had been completely stable. Now, despite things being a bit better, for example, myasthenia gravis, ability to breathe, stable since 2001, has reared its ugly head, and I'm trying to avoid my own hospitalization. The neuro doesn't want me to fly, travel at all, so I can't get to my Daughter, my *Grown Baby*, unless my O2 miraculously rises. Caretaking takes a physical toll as well. So *PLEASE* do an inventory of the things you just feel you cannot tolerate, and *please* get help changing any little detail of your life a bit at a time. With a newer spouse, I have some thoughts I never knew I could feel, but I will try to help. Not to say it is not perfect advice, but it has not been enough for me to say to myself "It's the disease," in certain instances. More helpful is the aspect of the disease that early to mid, there are *fluctuations*. This thought "fluctuations, I'm not crazy here," *plus* not letting myself be *bossed, cried, reasoned, however* into isolation, secrecy.
I will come back to help if I can. There are a few of us this young,spouses, which just makes it so unexpected, so hard. It's a lousy disease no matter what age, parent, spouse, whomever suffers from it. Cruel.
My local. support group. (LBDA, and I cannot recommend it enough: they even invite w/ respect, the patient) says don't look for days, just moments, the good moments. And they do happen, even after the hurdle of "coming back into the world."
Love to You, and All here, who will certainly help. Oh yes, learn everything you can about medications, anesthesias, illnesses.
Liz oxoxoxoxoxox


Thu Mar 08, 2007 11:54 am
Post To Beth from MD, From Liz
Dearest Beth,
(And All kind enough to have been here for me from start),
My heart is breaking for you, and I have *so much* I want to say to you: most of all, about the isolation. It *will* do you in; I had just about, despite therapy, gone "looney" myself. A better way to say it is that a side effect was really, at 50, losing my social skills, graces, etc., besides not liking who I had become *at all*.

Right now one of our Daughters is in a health situation that I *pray* will lead to only good answers, none bad. I am praying by the end of next week I'll know more, be "functional," as if the serious outcome were to be the case, I wouldn't know how to live. Another Daughter veryn very newly pregnant keeps me going in my mind. Of course my DH (Husband) regressed from any progress, or just not progressing *quite* as much, w/ this stress. And you know who it's being taken out on. We always were together on everything, caring, helping each other through.
SO, I *will* write w/ anything I can tell you (lots), but in the meantime: 1) Please, please apply to join the yahoo group for lbd caring spouses, where information, *totally* private matters as well (your Husband shouldn't object, as it's very, very private, closed); and 2) please, please w/ help of this group, the yahoo group and/or a therapist if you can, get out of isolation *every day* somehow. My health, poor from autoimmunes and other long standing issues, had been completely stable. Now, despite things being a bit better, for example, myasthenia gravis, ability to breathe, stable since 2001, has reared its ugly head, and I'm trying to avoid my own hospitalization. The neuro doesn't want me to fly, travel at all, so I can't get to my Daughter, my *Grown Baby*, unless my O2 miraculously rises. Caretaking takes a physical toll as well. So *PLEASE* do an inventory of the things you just feel you cannot tolerate, and *please* get help changing any little detail of your life a bit at a time. With a newer spouse, I have some thoughts I never knew I could feel, but I will try to help. Not to say it is not perfect advice, but it has not been enough for me to say to myself "It's the disease," in certain instances. More helpful is the aspect of the disease that early to mid, there are *fluctuations*. This thought "fluctuations, I'm not crazy here," *plus* not letting myself be *bossed, cried, reasoned, however* into isolation, secrecy.
I will come back to help if I can. There are a few of us this young,spouses, which just makes it so unexpected, so hard. It's a lousy disease no matter what age, parent, spouse, whomever suffers from it. Cruel.
My local. support group. (LBDA, and I cannot recommend it enough: they even invite w/ respect, the patient) says don't look for days, just moments, the good moments. And they do happen, even after the hurdle of "coming back into the world."
Love to You, and All here, who will certainly help. Oh yes, learn everything you can about medications, anesthesias, illnesses.
Liz oxoxoxoxoxox


Thu Mar 08, 2007 12:01 pm

Joined: Tue Feb 27, 2007 12:15 pm
Posts: 11
Location: MD
Post 
Liz,
Thank you so much for your support and the info. My time online is measured, as my husband is suspicious, and feels it takes time away from him (further isolating me). I joined the group on Yahoo. His neuropsych report is ready, and he said they could mail it-not fax, or even pick it up-the doctor is 3 miles from home. He is either in denial or has given up, or both. I don't have any POA. I am so sorry for all the issues you are facing, and can relate. 2.5 years ago, my son (now healthy, 20 next week!) was diagnosed with Hodgkin's disease; my husband's issues (my son's stepfather) were mounting, and 1 year ago, my father was diagnosed with lung cancer, and passed away Jan. 23. I am grateful that i am healthy, but at times feel overwhelmed-he says I am having a pity party. Just try to deal with 1 small issue at a time, and take care of yourself. I'm thinking of you

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Beth from Maryland


Fri Mar 09, 2007 12:31 pm
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Joined: Wed Feb 21, 2007 11:39 am
Posts: 87
Location: Lucca, Italy
Post behavior changes the hardest; new member
Hi Liz, I am glad you too have found this Forum but sorry for why you did....I am really sorry for what you are going through but sadly, you are not alone. I am a wee bit older than you 61, but married 31 years and 35 together, my husband being 10 years older than me ergo 71. We have no children and that has made him my life. We live in Italy, he is Italian, I am American, and I am feeling so desperately lonely. He was just recently dx with Parkinsonism and probably LBD. I am lucky so far as he is fairly normal, has the lewy lean and misses lots of beats but is still autonomous BUT what I do share with you is the anger and snapping and not wanting to be mean. It isn't easy Liz. We are not saints, or at least I am not a saint for sure. I feel as if my body is trembling from the stress. Instead of any major kind of support from his family I get the distinct impression that they do not trust my decisions. I find it frustrating and just want to scream! That makes me mean. Oh well, I have vented which probably hasn't helped you at all, but I just wanted you to know you are not alone. My husband isn't even aware of what's happening and that makes it hard on me as I discussed everything with him and now have to filter my conversation which is very limited now anyway. Please take care of yourself and vent when you need to. Irene

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Irene in Italy


Fri Mar 09, 2007 1:29 pm
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Joined: Wed Feb 21, 2007 11:39 am
Posts: 87
Location: Lucca, Italy
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Hi Liz, First of all just to set you straight there are two Irenes, Irene Selak and myself Irene the one in Italy. In any case, you asked an Irene where you could get more info. If you go to the LBDA Home page on the left side is a list of possibilities so start clicking. Good luck.

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Irene in Italy


Sat Mar 10, 2007 5:47 am
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