Hi folks. My mother was tentatively diagnosed with LBD about a year ago. From everything I've read, it seems pretty clear that she has it. A few months prior to being diagnosed, she moved back east (from California) to be close to my sister and her family, who had also recently moved there. My mom had been originally diagnosed with Parkinson's about 1.5 years prior. Her symptoms at that time were tremors in her hands and legs, along with some depression and anxiety. I had also been noticing a slow deterioration in her memory over that time as well, but thought it could be due to the depression.

After moving back east, my mother had almost no support system available and continued to deteriorate. She stopped taking her medications as prescribed, she started losing weight because she wasn't eating properly or well, she stopped taking care of the things she always took care of over the years (cleaning, bills, shopping, etc.). That's when the hallucinations and delusions began. She was ending up in the hospital just about every week. Finally, on one admission, the discharge social worker took a stand with my sister and told her that she would not discharge my mother unless she had 24/7 supervision. Being across the country, there wasn't much I could do over the months, but beg my sibling to get her in-home care. Now, I had the support of the hospital to get her the care she needed. Unfortunately, her budget would not allow for in-home care any longer than the short-term, so a long-term residential setting was more appropriate.

I ended up flying back east for a few days, researched the local SNF's, visited about 5 or 6, and found her a nice one to move into (Nice facilities, well staffed, other residents appeared happy and well taken care of, and she could have her own room with some of her own furniture and things). She's now been there for four months and while she initially began to thrive, lately she has started to become paranoid, agitated, and verbally abusive towards my sister (completely unlike the woman we grew up with). She has also begun to act out at the SNF, pulling the fire alarm early in the morning the other day, because she wanted to go to the hospital. They did send her and the hospital found nothing wrong, as is fairly typical. My sister is completely burnt out, overwhelmed, and frightened over what is happening to her mother, so she is no longer effective at advocating for her and doesn't even want to at this point.

After a good deal of discussion with my sister and wife, I decided to begin looking for suitable accommodations near us. It would mean another cross-county move for her, but better advocacy. I've worked in the mental health field for over 20 years and have experience working in care management, so I have the skills and knowledge to be much more helpful and less emotionally reactive than my sister. Assuming I can find somewhere near me within her budget, I just hope this is the right decision for my mother.

Dear Neil,
Welcome to the LBDA forums, as I was reading through your post on the happenings with your mom I was hoping you would say you were bringing her back to CA, Please make use of the LBDA.org, there you can order information packets and find support groups in your area, it will help set up a support system for yourself !

Before you move her, make sure you are the one who has POA, at least health care POA, on her behalf. Your sister may currently have it.

Lewy is unlike anything I have ever encountered as an RN. Some of our Lewy Loves are more problematic than others. Make sure you ask the proposed facility how they handle such behavior. My husband has been kicked out of a SNF [skilled nursing facility] and I know several others whose LOs were similarly discharged for 'behavioral issues'. Since most states do not allow them to literally discharge them without alternative placement, their usual ploy is to get them admitted to the hospital then refuse readmission. This happened in our case. That leaves the onus of re-placement on the hospital discharge planner and the family. Forewarned is forearmed!

I kept my husband at home for several years but was forced to admit him to a NSF in December because I was physically unable to transfer him without injuring myself. But he is no longer independently mobile so is not as difficult to control as he was before. A dementia care facility is best. Some of them require that the patient be mobile, at least in a wheelchair.

Hope this is helpful. Welcome to this wonderful forum and may God bless you for stepping up to the plate on behalf of your mother. I feel for your sister--it's very difficult.

Welcome Neil, you have come to the right place for advice, support, and very importantly, a feeling that you are not alone on this very difficult journey. I wish you the best of luck finding somewhere for your mother, and you are a wonderful son to take on this difficult task. Come here often, it is a lifesaver, and has saved my sanity many a time,
Ger

Hi Irene and Ger,

Thank you both for the warm welcome. My first task is to find a good local snf within her budget. I found a list of local nursing homes @ http://www.canhr.org/NH_Data/data_html/SClaraCo.html and found about 9 that say they accept Alzheimer's type residents for long-term care. I've also heard that several of the ones that don't specify, also do, but part of me worries about the lack of specialty when it comes to treatment knowledge. Then again, I just read over a post in one of the other forums here, where a specialty facility had one gentleman's mother arrested for assault. So, I know specialty facilities aren't always what they're cracked up to be.

If anyone knows of good resources in the Santa Clara or San Mateo county areas, please share them. Thanks.

Robin, who is on this forum, will probably come forth with some ideas. I think she lives in the Bay area and is very involved in support groups, etc. and will probably direct you to a good neurologist, as well.

Mockturtle. Thank you! Finding a good local neurologist that accepts MediCare is my second task.

Neil,
Feel free to contact me directly via email. I run an LBD caregiver support group in the Bay Area. We meet in San Mateo. We have many members in Santa Clara County who have placed their family members in facilities. The canhr website is a good place to start.
Robin

Yes, I can suggest some excellent local neurologists and psychiatrists for dealing with LBD.

Neil,
I knew Robin would step forward with resources, I just wasn't sure of the area in your first post, so I think you are on your way to some good help !
Good Luck with your Mom and yes the POA's are very important !

Hi Neil - glad you found this very caring and informative site. What you all are going through is really tough, and everyone on here is dealing with these issues, has dealt with them, or will be dealing with them. Once you find a suitable place and get her moved you will at least have that issue behind you. You and your sister (and your mom) have my complete empathy. Stop back here often! Lynn