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 I feel so guilty and can't stop crying 
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Joined: Tue Jun 19, 2012 7:27 pm
Posts: 7
Post I feel so guilty and can't stop crying
My partner was doing pretty good a couple of months ago, and then something changed. I had him checked out and no infection nothing. His hallucinations started coming more often but managable. Then within a 2 month period they started coming nightly, they were scary and dellusions and paranois also started up at the same time and he was up all night long, this went on for 3 weeks straight, no sleep for either of us. I swore he had a stroke or something, but they ruled that out also. I am younger than him 25 years but am disabled and work full time at home and have been able to take care of him until all of this nightly stuff happened. I had in home care coming for a couple of month to help me and him basically so i could take care of him. I took him to the ER at the VA and they had no beds, so sent me back home with serequel. I brought in home care for 12 hours at night to watch over him, he was more difficult than ever, no sleep for 8 hours after the serequel for those 2 nights and he was stumbling around and a mess. I took him back to the ER on his doctors request and they took him up to Loma Linda VA. He was there for 10 days and became violent. I told them he did not do well on the serequel but they continued to try it there to monitor him. Things went downhill from there. They actually increased in and gave him other meds too (trazadone) which didn't work. I requested 3 times they take him off and they felt he was doing okay with it but he continued to get worse and have severe outbursts. I could not get up there due to my disabilities. He is now back in SD and off the serequel, but he is a mess and came back to me at the hospital with full blown hallucinations and
dellusions and now in the geriatric psych unit and has some incontinence now too. He knows who I am but he basically is just sitting there hallucinating. He is off all meds for now to clear his system and will have to decide next week on how to proceed. I can't stop crying, I was in the middle of reading the caregiver book for LBD when everything just blew up with him. I still think something else is going on with him and so do the doctors but all the tests are not showing anything. I feel like i should have done more or tried to deal with it at home eventhough everyone was telling me it will kill me with my health issues, but how am I suppose to come to terms with him being such a mess when 2 months ago he was sitting here with me reading the paper and was himself and my robert and now he is never going to come home again. Everything happened so fast I just can't believe all of this and how it changed so quick. I feel so alone and lost without him after 26 years and we have no family near us at all.
so I am reaching out to all of you who hopefully understand what I am going through.


Fri Nov 23, 2012 10:53 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: I feel so guilty and can't stop crying
Sue, I am so touched by your difficulties! How I wish there was something I could do to help! But please know that many of us have been through similar experiences and understand your frustration with the medical personnel and their inability to help our LOs. You and your partner will be in my prayers today! God bless!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Fri Nov 23, 2012 1:12 pm

Joined: Mon Nov 07, 2011 12:43 pm
Posts: 6
Post Re: I feel so guilty and can't stop crying
Just came to the site because, after a wonderful day, my mother freaked out - that's the only way I can describe it - around 6:30 and it lasted for about 2 hours. Before that, she had one of her best days. Since I was with other family members yesterday, I told her today was Thanksgiving. We watched the Macy's Thanksgiving Day Parade which I had taped, sang a bit, she even communicated slightly on the phone with my brothers for the holiday. Then, something must have switched off in her brain, and that was it - she was like a caged animal! So I came onto the website with the intention of seeing if anyone else had experienced such circumstances and came upon your note. I can't make you feel or not feel a certain way, but, please try and not feel "guilty". It is such a waste of your emotions. If you want to cry, cry all you want - it's a release. But please know this, there is nothing you could do to "make it better". As they say today - it is what it is and, what it is, is a roller coaster ride. Things go along, and, from day to day, sometimes minute to minute, you don't know what to expect next. That is the nature of Lewy Body. At first, I was just like you, but, after 3 years of this, I've learned to just take the good days or moments and, when the bad ones come, like tonight, and like they have with your loved one, you just have to remember, it's the nature of the disease and, you can get a thousand tests, and it won't change a thing. I did it, too, in the beginning - did not want to face the fact that my mother had this - I always thought she'd die of a heart attack or stroke, but didn't ever think she's come down with this disease - I never even heard of it before! Now, I know more than I care to know about it. Please remember, too, you are not alone - you can always come to this forum. Also, if you call the association, I'm sure they can connect you with meetings in your area where you can talk over your problem in person with people who are going through the same thing, if that is what you'd feel comfortable doing. Hope this helped you, even a little bit. God Bless You.

Fri Nov 23, 2012 11:04 pm

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: I feel so guilty and can't stop crying
Your post resonates so strongly with me. Three and a half years ago, I arrived with Ted at a VA ER because he'd tried to pull the van over due to the "guys with guns" in the cars around us that he was seeing. It was horrible. This disease has caused me to feel wounded, exhausted, drained physically and emotionally. I have some family around, but nobody understands like the people on this website. Animal sobs into my pillow, collapsing into a ball due to the crushing sadness and guilt I'm feeling that I want this to end not only for him but for me. But, then some small miracle happens and you get that quick grin or kiss from him, or, just the comfort from some other source--it could be that odd friend that suddenly reaches out, the volunteer that left Ted something. Or, that I had a good visit just sitting there watching him rest for just a little while without the hallucinations or body twitching. It's a wrenching sadness. I hope you can inch towards something better, if only for a short while. When it gets that dark with me, I do give in to the crying and anger at my helplessness to really make this better for Ted. Then, something happens to give me a touch of happiness. This week, I received 2 cards out of the blue from 2 different people. Thought at first they were regular Christmas cards (nope, not doing those this year), but they weren't. They both just wanted to let me know they were thinking of us. How could they have known I especially needed that right then? Yesterday afternoon, we brought Ted's pug, PJ, to the NH--even though Ted no longer really can talk, he perked up and immediately tried to blow a kiss to her. The dog then just snuggled down on the foot of his bed for a good while. They both just slept, but I felt that he was happy she was there. That evening, I'd fed Ted some bites of Thanksgiving dinner again. It had seemed that he was sort of there, but not, and he fell asleep again, quickly. I felt that he was "gone" again and didn't know I was sitting there still. I was very sad. Then, an old teammate of Ted's showed up--just sat with me and Ted, smiling and making me feel less alone. He allowed me to talk about how Ted and I met, and I was able to reminisce about some happier times. I think that Ted could feel the love and I was able to leave more at peace with our terrible situation.

I can't make it better for you, though I wish I could so terribly. I can only tell you we are walking this path with you, and share your burden. I hope somehow it makes it a little lighter to know you are truly not alone.

Sat Nov 24, 2012 8:40 am

Joined: Tue Jun 19, 2012 7:27 pm
Posts: 7
Post Re: I feel so guilty and can't stop crying
Thank you all for your responses. Everything at this point helps me to try to deal with this alone. Knowing that others are going through this helps eventhough it is the saddest disease I have ever read about. It just all happened so fast I am still in shock and I was not in denial and was researching everything I could and reading all the books to prepare myself, but I guess nothing prepares you for some of these things when they are really happening and change so fast. I hope to continue to use the forum as I am disabled myself and still work full time from home and don't get out much myself so this will hopefully help me get through what lies ahead.

thank you all again for responding, i need to know i am not alone


Sat Nov 24, 2012 11:42 am

Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: I feel so guilty and can't stop crying
I too am feeling overwhelmed, angry and sad all at once. My sister with Alzheimers is visiting from Vermont & will be here another week. I thought it had been going pretty well but just found out she called her daughter (caregiver) that she wanted to come home & just told me she felt she had over stayed her welcome. She's been here a week. It's not the first time she has called to go home. She is here because I wanted to try & give my niece a break as she is a caregiver & running their restaurant a father losing her Dad to pancreatic cancer less than 2 years ago. My spouse w LB is doing pretty good but can't do much for himself. I am to prepare for Christmas because I'm afraid it may be my LO's last Christmas. Of course we all know how much can change & how quickly. I hate not knowing the future...his, mine, ours?

Jeanted,, I so admire you for writing what so many of us are thinking, have thought or will think. That is, "I so want this to end, not only for him but for me". When he was doing so badly I thought the same & felt the same guilt. Now that he is doing better on meds etc. I am so fearful of what the future holds for him & me. Fearful too of being able to measure up as a caregiver. I try to be loving but with my sister here who is not particularly grateful for anything, unlike my LO, it s hard to maintain a loving nature. Then I feel like crap for losing may patience. Thank you for listening and caring. You are all in my prayers.


Sun Nov 25, 2012 5:03 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: I feel so guilty and can't stop crying
It is so easy for us to feel guilty, (especially women) and it really is an energy-zapper. And, at times we have all felt overwhelmed and exhausted, so it's pretty easy to lose our patience (and maybe our tempers!) and then we feel even more guilty. Just remember that you are doing the best you can do under very trying circumstances. The less guilty you feel the more energy you have to help your LO, whether it's making phone calls to find another dr. or set up an appt., or answer the same question you just answered 10 times in the last hour, etc. Take a deep breath, try to get a good night's sleep and do something no matter how small it may seem to take care of yourself. You can't be a good CG if you get under the weather... Have a good evening, Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sun Nov 25, 2012 7:34 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: I feel so guilty and can't stop crying
Sometimes when there are changes in our LO with the illness there isn't much we can do but sit by and watch it happen and it makes us feel so helpless and sad and that's why I think support groups are so important, its a way for us to talk and get these things off our chest and sometimes just being with out LO is enough !

Irene Selak

Thu Nov 29, 2012 12:09 pm
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