Thanks Suseig for your words of comfort. Glad to hear your husband is responding so well to the new meds. My Dad is also on those medications that your husband is on. I think our neurologist knew along what was happening to Dad but just never told us or never wrote it in report. How else would he have to perscribe the exact tablets that all lbd patients seem to be on? I'll be asking him all these questions on Oct 31st.

Did your husband have a sudden decline and then improve back to what he was before that decline?

Conor

Hi Conor,
Welcome to the forum. I hope you will find information, comfort and support here. So sorry, though, that you have to be here.

Your description of the "assessment" done via your sister reminded me of the assessment done of my mother by a home care nurse. I wanted the nurse to experience mom's lack of decision making ability and executive function, so I decided not to provide answers for her (I usually provided answers because she would become very anxious when she didn't know the answers). I would usually speak to whatever professional we were seeing that day prior to the appointment, to explain LBD and give a "heads up" for things to watch for. REGRETFULLY, the nurse had no assessment skills and no knowledge of LBD. So, instead of asking my mother what she typically made herself for meals during the day, the nurse said "And you're making all your own meals, right?" and nodded at my mother....who of course nodded back. At that point in time my mother was unable to make a decision about what to eat and if she could make that decision she lacked the ability to prepare food. The entire assessment went that way, and the nurse concluded that mother did not need any in home supports. I was fortunate that mom had just been through a complete geriatic assessment (where her LBD had been diagnosed). I contacted the clinic, told them the story of the "assessment" and asked for their help. They contacted the home care folks immediately, the decision was reversed, and home care started immediately, pending placement in an assisted living facility.

I guess the point of this story is that SO much depends on the knowledge and skill set of the person doing the assessment. I considered it my job to educate the professionals we were dealing with about LBD, and I found most of them to be grateful for the information.

Make notes of what symptoms and behaviors that you have personally witnessed and ensure that the doctor is aware of these. Give clear examples. Do a lot of research and educate yourself about LBD, and share that knowledge with the doctor. The doctor cannot see your father in his natural environment; you need to provide that picture for him. Give him clues about what to look for and what to ask about. I found through the years that even specialists like neurologists often lack knowledge of LBD, unless they have specifically sought out that information.

Sorry this was so long-winded, but your "assessment " story just rang my memory bells!

Come here often, share your journey, and know that you're not alone.

Peace,
Suzee

Dear Conor,
I'm sorry I didn't respond to your post sooner. Yesterday I got the post completed and then somehow it disappeared from my computer. Yes, my husband has had sudden declines....actually at least 4 since October 2011. The first was before diagnosis and was due to an emotional trauma. The second was in January of 2012 due to prescription and OTC medicine for an extremely bad cold. It was at this time that our primary doctor thought my husband might have Parkinson's and referred us to a neurologist.The third was in April of 2012 on a return trip from Hawaii that our son and his wife asked us to join them on. He was fine going and while there but went drastically and dramatically downhill as soon as we entered the airport to come home. They gave him 8 canisters of oxygen and he remembers nothing about the trip home. He was totally incapacitated and paramedics took us to the hospital in the ambulance upon arrival at DFW. It was at this time that we found our current neurologist who has been instrumental in getting my husband back to his baseline. The fourth was in June when we were traveling across the country by car and he was having a terrible reaction to Aricept. Each of these times he recovered to an extent but it is only in the past 2 months w/ the increase in Seroquel, Exelon Patch and Sinemet at the maximum the doctor wants him on that I feel he is back to a baseline prior to October of 2011. I am very grateful. I wish you and yours the best in your Lewy Body Dementia journey, Conor, the journey none of us want to be on.

Susieg

Conor - there are some others on here who live in Ireland - hopefully they will see your posts and have some info. about legal issues that might be helpful to you. All the best, sorry you need to be here! Lynn

Conor, good for you for hanging in there and doing the right thing for your dad!
You are in my prayers.
Take care,
Pat