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 A Boost needed from my lbd sisters 
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Joined: Mon Jun 26, 2006 11:50 pm
Posts: 11
Location: Texas
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My Dad died last week but all your posts sound just like what I've been through this past few months. My advice would be to stay involved, be persistent and ask for hospice care as soon as you can get it. State law prohibts many things in hospitals and nursing homes but hospice has an amazing amount of autonomy to order equipment and drugs. They have an army of support personnel to help you get through all this. Talk to the social worker at the psych hospital for help also in placement ideas, even if it's help in the home or dementia units in town. Keep asking questions to everyone you see and telling everyone that he has LBD and is not to be treated like a normal geriatric patient.


Tue Sep 01, 2009 11:24 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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sford,
My condolences on the passing of your father.
Robin


Wed Sep 02, 2009 12:19 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Sford, Sorry about your dad's passing but I think most on the forum feel it is blessing for the LBD person and their families, he is finally at peace. You and your family are in our prayer and thoughts.

Gerry


Wed Sep 02, 2009 7:06 am
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
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I hope I can keep him home !!! I am now living with 2 hubbys--GW and Mr Lewy. My normally sweet, kind, loving,sensitive GW has been waking up as Mr Lewy-calling me names telling me I am a bad worthless person who is torturing him. Last week he tried to hit and kick me,one morning. Day before yesterday Mr Lewy woke with the abusive talk then started throwing things at me (his depends, then the walker went over the top of his dressing bench). About then our carehelper arrived. We could not talk naked my Lewy into getting back into his cozy warm bed. This man that needed a walker to get from his bed to the toilet5 minutes before, actually ran across the room to try to kick me and threw a bar of soap. at this point I started opening all doors in the house so we would have an escape route and started thinking of the instructions I've been reading on this cite. Naked Mr Lewy chassed after the caregiver towards the front door, but decided to come back to the dineing area and crumple several of my papers that were there,as I was trying to entice him back to bed. He giggled like a naughty 3 yearold when we would react to his starting to chase us. Finally he sat down. after a few minutes I thought GW had returned. I asked him if he would like to take his morning pills-he said Yes. I handed him his glass of juice and started to put a pill in his mouth but got a full glass of juice in my face. Then the glass came flying at my head-I ducked and the glass went thru the open sliding door and shattered on the outside patio. At that point I called 911. The sheriff and fire dept were here in 5 min and the sight of all those big blue uniforms brought GW into remorseful tears and apologies. the medic determined no unusial vitals and then he allowed me to give the medications and get Gw into his bed. 45 minutes nap later GW had no recollection of the mornings events.
Yesterday I did interviews at 2 care centers. I'm having a hard time believing that they could get him to the toilet in time and keep him safe from falling when they have so many others to watch over at the same time.
Got to run to another appointment now-----
Di

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Di


Wed Sep 02, 2009 1:28 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Di, My heart goes out to you. We all have our struggles but to date, I've only had the virbal abuse not the out of control behavior you are experiencing. Maybe his Dr. could review his meds and try to find something that would make him more mellow. Good Luck

Gerry


Wed Sep 02, 2009 5:44 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Di,
Sorry you are going through this, if this is a new behavior and sudden could be some sort of infection going on with him, I know UTI's cause many problems with LBD'ers.
Good Luck and I hope it all works out!

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Irene Selak


Wed Sep 02, 2009 6:03 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Di,
That's quite a story. Glad you are OK. Let me know if you need suggestions for care centers. Have you met Rosalee? I think her husband is in a care facility near you. Wonder what the staff would do with two Mr. Lewys around!?
Robin


Wed Sep 02, 2009 8:57 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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Di,

What a terrible experience, and "reward" for all the hard work and care you have devoted to your LO. I don't know how I would react if my husband behaved that way. I guess I'm lucky so far in having someone who's changed from a passionate and lively person into an apathetic, quiet old man whose only demand is a mumbled "what am I supposed to do now?"

I support your decision to place your LO in a facility and hope you find one that can manage him. I also think it's a good idea to check for something like an UTI that might be causing the Lewy's to boil over. Good luck, Doris


Thu Sep 03, 2009 12:47 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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JudyPat --
Fingers crossed for you!

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Renata (and Jerome-in-Heaven)


Thu Sep 03, 2009 1:41 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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sford --
So very sorry for your loss -- thanks for the reminder to be relentless advocates on behalf of our LOs.

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Renata (and Jerome-in-Heaven)


Thu Sep 03, 2009 1:46 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Di --
When weighing your concern about bathroom trips and possible falls if GW is in a care center, do not forget to balance that with the possibility of very serious physical harm to you if Mr. Lewy shows up again and takes things a step further. YOUR safety is at least (if not more important) than his. After all, if you are hurt, who will care/advocate for HIM?

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Renata (and Jerome-in-Heaven)


Thu Sep 03, 2009 1:49 pm
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Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
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Thanks everyone, for replys and concerns. I am being super cautious approaching him as he wakes. No more signs of Mr Lewy, but GW has been even more gentle and appreciative than ever. Seems to have no recollection of Mondays events. He has been tested- no UTI, etc-- a possibility is that I've been putting him to bed about 30-45 minutes earlier for about 2 weeks-- maybe that causes his bed time meds to be over stretched, as I didn't give the AM meds any earlier.
I am also still interviewing with care centers as they are recommended.
DI

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Di


Fri Sep 04, 2009 4:45 pm
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Joined: Thu Mar 12, 2009 1:23 am
Posts: 26
Post Caregiving - a hard job
Lori,
Wow, what a struggle. You are in my prayers. I can relate to the anger. Though I do not have a definitive diagnosis yet for my husband, he has many of the signs and symptoms of Lewy. He has had a great deal of Psychosis - in fact, that is what he has been treated for now over 1 1/2 years - very little of the standard Bipolar treatments worked and he was rapidly having a loss of cognitive function - which tipped me off that something else was going on here. Getting doctors to listen to me is a chore. I can remember being really angry at my husband once because he was very psychotic and doing strange things but when I took him to the doctor, he pulled himself together long enough to seem fairly OK and the doctor believed it!! As soon as we left, he was back to being strange as can be on the car ride home. I had to ask his forgiveness too.... but more importantly, I had to forgive myself.

Now my husband is in a nursing facility. Hard, yes. But it saved my sanity. I tried caring for him at home, but I am only 46 and still working and it was so stressful trying to care for him at home. He does not have the issues you spoke of, but did require constant supervision. He is in a home an hour away (none of the homes closer would take him because he had become aggressive). He ended up in a home that had a psych unit. He has been there 7 months. I have my sanity; I sleep well knowing he is cared for and safe, and I go when I can to visit (I can't go every day since I work and he's so far, but he has adapted and gets visits about 3 or 4 times a week from either me or his parents).

I'd like to suggest a book for you to read. It is not a long book but it is so healing. "Share my Lonesome Valley" by Doug Manning. I bawled my way through it the first time and am going back through it again. He puts into words so eloquently the very things I have thought and dared not even share with another soul. He validated feelings and emotions that only someone in your position could know. I bought a copy off of Amazon.com super cheap. Please consider it. You won't be sorry to have read it!

I will keep you in my thoughts and prayers. God bless,
Jane Grace


Tue Oct 27, 2009 1:50 am
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
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Jane,

Thanks for the suggestion on the book: "Share my Lonesome Valley" by Doug Manning. I've emailed my library for a copy to read.

Karen


Tue Oct 27, 2009 6:51 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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Thanks for kind words and empathy. I'm going to go right now and look on amazon or library! Thank you. Thank you. I'm so sorry your about your husband too. Much much much too young. Mine is 71 and I'm 51. He was diagnosed at 62.
God bless you too!
Lori


Tue Oct 27, 2009 9:39 pm
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