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 Mother in Law has Mid to Late StageLBD 
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Mother in Law has Mid to Late StageLBD
Hello all. Now where do I begin? I guess the first thing that I must say is thank God for this forum and all the people who use it and post in it. It has already given me some peace of mind knowing that I am not alone. My prayers are going out to all of the CGs and LOs with this horrible desease. Now my story, I am the Son in Law to a wonderful woman that has been struck with LBD. My wife is having a terrible time with what is happening to her mother and is currently blaming me and her siblings for what has occured over the past few weeks. Over the course of last summer my wifes younger brother (who lives out of state) and I decided that Mom needed to have a will drawn up. The lawyer that we used also recomended that we have a medical directive and POA drawn up also which we did. It was decided that I would be on the POA with my BIL since he is out of state. My BIL finally convinced Mom with the help of her favorite Preist and few friends that she should sign the documents to get them in place. It was a job since Mom has not been very trusting of anyone over the last few years.
I was speaking with my SIL who lives an hour away and who is my biggest help at this time about when she started noticing that something wasn't quite write with Mom and she said about 4 years ago after she had a stint placed in her heart and was put on the standard heart meds. I really started noticing the delusions about 3 years ago, it started with her nieghbor behind her controlling different things in her house and progressed to him shocking her. It was with this delusion that I saw that you can't reason with Mom on this. At this time we had no clue about LBD. A little over 2 1/2 years ago Mom wrecked her car and was put on a lot of pain meds that could have helped the LBD along, then after recovering from that event her house was broken into. Thank God she was not home at the time, after the break in she went to stay with my SIL while we repaired her house. While at the SIL's house she fell and boke her arm to the point where she was hospitalized. It was then that we really started seeing the hallucinating become previlent. After she was released from the hospital my BIL who lives in Florida suggested that maybe a change of scenery would help Mom recover so she was talked into going for a visit. He quickly found out that this would not work. Since she was down in Florida he took Mom to a physchiatrist who finally gave us the LBD diagnosis.
Upon returning my wife, SIL, and I started taking turns spending the night with Mom to try to ease her mind and also make sure that she didn't do anything rash. I was the one spending the most time over Mom's house because my wife had a very dfficult time dealing with the delusions. Mom seemed to be especially hard on my wife who is the youngest of her children.
I know this is a long post so lets fast foward to the last 3 weeks. After she had walked 2 1/2 blocks to the local fire station one morning and claimed to have been raped and beaten we took her to our local hospital ER and asked that she get physchiatric eval. After waiting 4 hours she was finally seen and we were told that this hospital could not do an eval on a geriatric patient, they did a complete physical work up and determined that she had a UTI and was dehydrated. They kept her acouple of days and released her. When she got home she hid all of her meds from us and would get angry at us if we asked her about them. 4 days later I was spending the weekend with her and she started to threaten to kill me (which I ignored) and then called the police while I wasn't in the room. The police of course figured it out and left. Needless to say it was a very tense afternoon and night. The next day we found out that a hospital in a nieghboring city had a Geri Physc ward and a process to admit a patient against there will using a tempoary detaining order which we did. The doctors determined that she had moderate to severe dementia and should not be left alone at all. The BIL and SIL and I found a local NH that would accept her and she was placed there using the my POA and a letter from the doctors. Unfortunatly the doctors put her on Prozac and Resperidol to which she had a reaction. While at the NH she evidently had a fall that was not reported to us. The SIL received a call from the NH saying that Mom was sick and needed to go to a Now care center. When I arrived at the NH I could look at Mom and tell she was over medicated or somthing so it was back to the hospital where they determined that it was the Resperidol that caused the problem. She has since recovered mentally from the Reseridol but cannot stand or walk at this time and is in a rehab facility to try to correct that since she was able to walk 3 weeks ago.


Thu Mar 24, 2011 9:21 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mother in Law has Mid to Late StageLBD
First of all, welcome! Sorry you have to be here but so glad you found this forum. My husband was pretty far along by the time I found it and we could have avoided some major problems [like risperidone--Risperdal, to which he also had a severe reaction].

I would like to encourage you that things will get better but that--alas!--is never the case. Even when they are placed in a facility, there are myriad problems that must be dealt with and constant monitoring of care is necessary to assure their needs are being properly met. The paranoia and combativeness still arise and their mental and physical condition progressively deteriorates. It's painful for them and for us.

God bless you for stepping up to the plate and managing your MIL's care. It's not easy.

_________________
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.


Thu Mar 24, 2011 9:41 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Mother in Law has Mid to Late StageLBD
Wow! Your family has really had a tough time the past few years. Welcome to the Board. I think you'll find a lot of good info that can help and good people to talk to. As a start, if you go to the home page of the lbda website at http://www.lbda.org you'll find a lot of educational material on Lewy Body Dementia that you can share with everyone involved in caring for your MIL. I recommend you check back here frequently 'cause I bet you'll get a lot of posts. The search function is also wonderful. Sorry you have to be here but I'm glad you found the site. AnnieN

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Annie, daughter of brave Marie, dx 2007 and in ALF


Thu Mar 24, 2011 9:46 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mother in Law has Mid to Late StageLBD
I'm so sorry. I remember similar days with my late husband and your story is all too familiar. Welcome. I hope others will give you information. I just want you to know you aren't alone.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Mar 24, 2011 10:00 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mother in Law has Mid to Late StageLBD
Sorry for your need to be here, but you have come to the right place. It has saved my sanity on numerous occasions already.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Thu Mar 24, 2011 10:03 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Mother in Law has Mid to Late StageLBD
Welcome. Finding this place saved my sanity. If nothing else, you will know you have a place to come to where people understand what you are going thgough. Just knowing you are not alone in this process is such a comfort. Smiles, Nan...67, CG to husband 74. Dx with PDD a year ago, 14 years ago Dx with Parkinson's.


Thu Mar 24, 2011 12:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mother in Law has Mid to Late StageLBD
Sorry to hear about your mom's reaction to Risperdal. Surprisingly, a few with LBD can tolerate this medication.

Who is the psychiatrist in FL who did the diagnosing?


Thu Mar 24, 2011 2:08 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Mother in Law has Mid to Late StageLBD
agr, I'm so glad you found this site. May it be a little bit of comfort to know that others are dealing with what you are handling. You are also likely to encounter some tips about things that work/didn't work for others. No two patients are exactly alike, but I'm sure you'll see lots of similarities.

It should go without saying, but I'll say it anyway. You and your in-laws are not to blame for what is going on with your dear MIL. You are doing your utmost to get appropriate help for the LO. Along with all the stress and self-doubt and hard work, it must be discouraging to have your wife blame you. She has been dealt a heavy emotional blow and it is not surprising that she is reeling. It is doubly hard on you to be a supporter for Mom and for your wife. I hope that resolves as your wife has more time to absorb the situation and learns more about the disease. I guess I'd consider some professional counseling help if improvement seems slow.

I'm sorry for your need to be here, but I welcome you.
Jeanne

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Mar 24, 2011 6:53 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: Mother in Law has Mid to Late StageLBD
Nothing like a good son-in-law! I'm serious. Hope you have a tough skin. You will need it for the journey you are on. Hope you can stay the course... Come to the forum as needed, There is more here now than when I joined.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Mar 24, 2011 8:44 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Mother in Law has Mid to Late StageLBD
Hi AGR, and welcome. Sorry for your need to be here. Your MIL sounds much like my dad a couple of years ago, only he was medicated with drugs that made him worse or have other symptoms. It's a rough journey, so please come back often for support here - it's a wonderful place for that and for practical info. too. Perhaps you can talk with your wife about joining the forum too? She'll find so many similarities with her situation and many of us here. That may help! Take care, 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.


Thu Mar 24, 2011 8:55 pm
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Re: Mother in Law has Mid to Late StageLBD
Thanks for all the replies and encouragement. Since she was with the BIL in Fl. I do not know the Doctors name who diagnosed the LBD. I just wish I had known something about LBD much earlier. I am starting to teach my son about LBD and dementia in general so he won't be blindsided like we were with Mom. He needs to know because my wife will become a basket case if I come down with something like LBD. I am also considering buying some long term care insurance to protect my assets.


Thu Mar 24, 2011 10:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Mother in Law has Mid to Late StageLBD
Probably most of us had never heard about LBD before our LOs became ill and it would be so much more helpful if more people knew about this, wouldn't it?
Re: LTC insurances - there is a posting on here somewhere about some really good ins. one or more people found. If you do a search you should see some discussion about this. There's some great ins. out there, and there is some lousy ins. out there (my dad'd LTC ins. only paid $750 a month towards his $5,500 ALF expenses, and he'd paid over $35,000 into the ins. co. over the years. Definitely he'd have been better off investing that $ than buying ins. Some others have had good experiences, however.) 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.


Thu Mar 24, 2011 11:16 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mother in Law has Mid to Late StageLBD
Welcome Agr,
Sadly your story is one I have heard toomany times and we all wish we knew more about LBD before it hit home, I am sorry for all that the family is going through and I do hope you can all come to an even level with it !
Glad you found the group !

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Irene Selak


Fri Mar 25, 2011 1:19 pm
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