Keeping Louis "with me" as long as I can!

My husband, Louis, was diagnosed with frontotemperal dementia before he was diagnosed with PD. He's sleeping well. Finally! He's on Nuplazid and he has not had an hallucination since! He's eating well. We have five wonderful children who help me caregive. So what's the problem? Louis can't hear even with aids. He cannot see to read and sometimes, he has to look around and follow my voice to find me in a room. Yesterday, he knew I was his wife but couldn't remember my name! Today, he could remember my name. I don't want this post to sound negative. I have a strong faith in God and I know that Louis and I are exactly where He wants us to be. I, like many of you, am learning to live one moment at a time. I just feel like Louis is slowly slipping away from me! Is anyone out there experiencing this with your loved one? Does anyone have any advice for me as I accept the changes that seem to be happening?

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  • You sound like a deeply loving wife. I believe faith is a great gift that pays in dividends. So the Nuplazid is for dementia? What does he take for the PD? Do they increase the dosage on the Nuplazid as the illness progresses so as to keep on top of it as much as possible? One of the things I found so mysterious with my dad when he was losing his hearing was that if I whispered something to someone else in his presence, he seemed to hear me at least partially. But if I spoke to him directly, I'd have to take several stabs at it before he heard me and comprehended what I was trying to say. Do you ever get this with Louis?

    Warm regards,

    Beckey

  • Yes I also am feeling the loss . It seems that I am needed more than loved. I also believe that God is with us and will see us through this . I will care for my husband as long as I am able. I try to be grateful for every day. I cherish the moments that I connect with him and if he smiles. God bless you and your husband. Be assured there are many on this site that are experiencing what you are.

  • The Nuplazid is a new drug that the PD neurologists gave Louis after he had an awful hallucination event! One night in the middle of the night, Louis got up and grabbed the foot bedpost and pulled it toward him to the point of breaking the entire footboard. I grabbed with both hands in the opposite direction and managed to dial our son for help. In the meantime, Louis took my fingers off the bedposts one by one and came around the bed. He put his hands (loosely) around my neck and growled at me. I saw the devil in his eyes. I got loose and my son got there and he saw and heard his dad talk about something going into a hole under the bed! He stayed the night with us and he and his siblings took turns spending a week with us - at night. The Nuplazid is a new drug used specifically for PD hallucinations. It is sent to us by a specialty pharmacy like CVS. I cannot get it through our regular pharmacist. Louis has NOT had another event since then. My children encouraged me to buy a king bed in the form of two twins so I could separate myself - in case. But he chooses to sleep all night in his lift recliner. All guns have been removed from the house. Now, Louis is on many different meds - for different probs. He takes Sinemet 3x3 times a day. At 4 pm, he takes two Nuplazid. At bedtime, about 8, he has a cocktail of 4 meds: Remeron, gabapentine, one Stalevo 50/200/200) and one Sinemet. He is sleeping all night, with one trip to bathroom. I ordered an inexpensive little sensor that wakes me up when he wants to get up. Remember, Louis has frontotemperol dementia. He cannot even handle the remote for his two lift chairs.

    Louis would never have purposefully hurt me. I share all of the above because I want you all to know that there is something out there for those hallucinations. When he was placed on Nuplazid, the neuro on call took him off all Stalevo. He was on a regimine of Stalevo because he had a bad bout with akathesia about two years ago. The drug buildup might have caused the hallucination. You and I know that the drugs themselves can sometimes be problematic! Since then, his neuro but him back on one Stalevo at bedtime because the one Sinemet was wearing off at about 2-3 am! Now he sleeps all night. Thank you, good and powerful God!

    This site has been my salvation as Louis's caregiver! I have learned so many powerful lessons since Louis's dementia and PD. We can no longer hide it and I am now comfortable with that. I've learned to never say never! You all inspire me and educate and console me!

    Thank you for being there for me!!! I repeat my offer. If you are ever in the South Louisiana, come on by and we'll offer you some good ole Cajun hospitalitity.

    God bless all of you!

  • I see you live in South Louisiana. I grew up near there.

    Do u like your husband's neurologist and most importantly, do u trust him or her? Do u have to drive to another city like New Orleans or is the neuro local?

  • Neuro is a Movement specialist in Baton Rouge!

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