Hi, my name is Victoria and my 88-year-old mother was recently diagnosed with LBD.
She has always had vivid dreams, but a year or so ago she had a nasty fall while acting out a dream and broke her shoulder blade. She subsequently developed other problems such as hallucinations, blood pressure fluctuations, confusion, not eating, dehydration, even a chronic runny nose. Last March she ended up in the ICU due to her blood pressure fluctuations and heart arhythmia. She got a pacemaker and recovered enough to return to her apartment and was even able to drive again.
I went to visit her in November while she was healthy and lucid and it was the best thing I could have done because shortly afterward she fell again while dreaming and broke the other shoulder blade. She has gone into quite a decline since then. A month ago she moved into assisted living. Her symptoms continued to increase and she lost so much weight that she was hospitalized for rehydrating and nourishment. While in the hospital she experienced regular hallucinations and was given Haldol. Fortunately, they had her assessed by a neurologist who quickly diagnosed LBD. They are trying Aricept. She has been moved to a dementia unit in a NH. We're holding her apartment at the assisted living facility for a couple of weeks to see if she improves enough to return to it. Otherwise, she's in a very nice NH.
My siblings and I are scattered all over the United States so caretaking has fallen to my oldest sister who lives in the same town in Michigan as my mother. I was able to visit her again when she was moving into assisted living and was surprised at her decline. My sister reports that she has continued to decline rapidly and is beginning to experience muscle stiffness.
I am very happy to have found the LBDA website and have been sharing information with my siblings.

A warm welcome to the forum, Victoria! You will learn much and receive much support and encouragement here. My husband of 80 [I am 64] has LBD and I'm caring for him at home for as long as I am able. It sounds like your mother is where she probably needs to be in the SNF [Skilled Nursing Facility]. Most ALFs [Assisted Living Facilities] assume a certain level of independence and many scarcely monitor their residents at all. Her needs will increase, not decrease. I wish you well in your advocacy on her behalf. God bless you! --Pat

VictoriaS,

Sorry you've had to join us here, but welcome. Your mother has really gone through a lot lately, as have others in your family. Sometimes the changes come so quickly it's hard to adjust mentally.

Has the Haldol been discontinued?

I hope you'll consider speaking with your Michigan-based sister about signing your mother up for brain donation. It's the only way to get a confirmed diagnosis of LBD.

Robin

Thank you for your warm welcomes. The Haldol was discontinued pretty much right away. Fortunately things moved fairly quickly once she got into the hospital; it was only a matter of days until she got the diagnosis. It has been really interesting to read about all the symptoms of LBD and to look back and see that many of them were present in the past year or more.
The ALF was very supportive and tried their best to help Mom. She lives in a small town and everyone sort of knows one another. The NH she's in is one she went to for rehab after her first broken shoulder blade and we know it's one she likes. She has a private room with a comfy chair and sofa. They have been getting her up and to activities. Apparently she was "a lot more alert" yesterday. They have had some trouble with her trying to get out of bed at night (those dreams) and she fell on Wednesday night. They have an alarm on her bed, but she can still get out. The NH is actually in Wisconsin (she lives in the UP of Michigan, right across the border from Wisconsin) and Wisconsin has restrictions on the use of restraints. My sister is checking to see what they can do to keep her safer at night.
And regarding the brain donation, I suppose that's a conversation we'll have to get to. My sister has POA.

I just found out that they've given Mom a low bed, about a foot off the floor, with a mat on the floor beside it. She still has the alarm, but it will be hard for her to get out of bed without help and she'll have a soft landing if she falls.

Victoria,
Welcome to the LBDA forums, you have come to the right place where we all understand what families go through with this disease, Often Facilities will lower a residents bed as they are are fall risk, sounds like your Mom has been through a great deal and often when a person is DX'ed we often see things that have been going on for some time with our loved ones. Visit us often and feel free to discuss anything.

Hi Victoria - just want to extend my welcome also. This is a "soft place to land" - there are many wonderful people here who know what you are going through. I hope you'll stay active in the forum and the chat as well. All the best, Lynn