To all those who stories I have read today my heart goes out to you and your love one. Even twenty months later it is still difficult to review our 68 day journey. For now let me just share a few important things I learned and wish someone had shared with me.
Actually I tried to write this four times today kept deleting I could not keep from sharing a few things I learned and hope some might be helpful to those still on this journey with LBD.
YOUR ARE THE ADVOCATE FOR YOUR LOVE ONE!
Educate yourself, read all you can medical site become familiar with signs, reactions to medications, do’s and don’t for those with possible LBD.(don’t wait for someone to step up and know it all )
Keep a JOURNAL you know this person better then anyone write it down. Written information with dates/times, reactions, nightmares, visions, falls, anger, reactions that differ from the norm of your love one. TAKE this with you everywhere this journal is a RECORD do not rely on memory. If needed research a new medicine it might be totally wrong worth a question.
Search for answers, question care takers even professional ones like doctors, nurses, hospital staff, nursing staff etc. YOU are the ADVOCATE for your love one. Certified locked nursing homes for Alzheimer/LBD patients with certified STAFF are hard to locate, but are in most states. They may be the best location for your love ones care and safety. (Yes we found such a location near the doctor who recognize LBD but within seven days my love one required hospice and could not be admitted rather was placed in a room with a Alzheimer patient. Within five days was moved to our home when he passed away.
THE BEST ADVICE of all !! Cherish each moment you have with your love as they are lucid they are a in there! Cherish the moments when they are lucid with encouragement, love and hugs. When I do write my book/article it will focus on those lovely moments as well as the battle it was to advocate for my love one. Sure not everyone liked my many questions keep calm, but be stubborn this is your love ones life and it is slipping away.
We did find doctors who had answers not the answers ones we wanted or like but at times just an answer is important. Twenty-five days before my love one passed away we found a physican who said LBD and this is what is happening to his brain and what you can expect.
This statement was so important to us!
Whether it is Alzheimers or LBD the patient is moving from the age/year/moment he/she starts this journey toward the WOMB mentally. LBD as it advances the body/brain circuits begin to shut down. At times within days or hours. Everything Dr. Linker told us happened even his idea that our love one had three weeks to live the day we left the hospital.
Goodness how I prayed whether to write this but felt so strongly that if even one thing mentioned here would help someone during your journey it will be worth it.
By the passing of my love one I was extremely angry, exhausted, stressed emotionally and physically. I felt I would quickly be able to write about this difficult journey but that has not happen who want to hear a rant rather after I gather my thoughts that as they are shared will help someone else who faces or faced such a difficult journey.
My hope is this is useful.
Oct 17, 2013