Oh, Leone!

Went to dads ALF xmas part yesterday. Dad was happy to see me and the kids as he had forgotten we were coming. He was however having a very delusional time and because we were sitting right next to the speakers for the entertainment ( God I wish she would stop singing) I couldn't hear what dad was telling me so was difficult. He asked a few times where my sister was and why she hadn't been to see him. I explained she had been out at her property but was coming in this weekend as her and John were flying down to see a concert in Brisbane and mum was looking after the kids. It's does stick in my throat a little that she has not seen dad for 2 months or more yet can find the time to go to a concert. Maybe I am a little jealous it is Bon Jovi after all LOL! Anyway I had my husband pick the kids up as I could sense it was going to be difficult saying goodbyes and I didn't know how I was going to be emotionally. Dad and I ended up going to sit in the mood room a little and his eyes were like really wide just telling his stories I was trying to just get him to relax but he just cried as he couldn't clear his head it was horrible sitting there watching him go through this.
He has been on sinemet for nearly a week now for his stooping and it has made a considerable improvement on his posture I have to say but probably made his delusions worse perhaps? So we sat in the lounge and he asked when he was going home to see the house and I couldn't answer him this is soooooooooo unfair. So we both cried on each others shoulder and said goodbye and when I got in the car this song came on that just did me in and I cried all the way home. I am welling up now writing this I am just so fragile at the moment. I could really just give Xmas a huge swerve this year if it wasn't for the kids.
Am heading to mums today for her xmas party (still haven't been asked if I would be coming mind you) and seeing how she has my sisters kids am going to leave my two with her too and get them on Tuesday. The way I am feeling anything could happen at mums I am hoping for it to bring us closer but it is going to take all my strength to stay composed as people are going to ask after dad and I am pretty raw.
Was going to stay the night but will probably drive home as less than an hour away.
Sorry to post doom and gloom after the bit of fun you were having re the W/C.
PS. When dad and I were in the ALF he was showing me the kitchen and saying how he was in there the other day. I said "Dad, If you go in there you have to do the washing up." and he looked at me and laughed and said "Oh Kelli you're funny. Just trying to remember a light moment from a pretty emotional visit.

Thanks Leone. I decided not to go to mums party the way I am I don't think I could handle my emotions. I have people coming over tomorrow arvo and I am honestly worried about driving and falling asleep my eyes feel so tired from crying (had another meltdown on phone with mum this morning). This time of year is so hectic. Mum is coming up to see dad tomorrow and his little sister and her husband are visiting him too so that will be a nice surprise for him. (I hope). I think I will enquire to dads dosage on the sinemet and see if it was on the higher end.

Kelli - do whatever you need to do to get good sleep every night so you don't end up getting sick or having an accident. I fell asleep at the wheel this summer going to my dad's - I was in the first hour of driving and had about 7 - 8 hours to go, driving by myself. Luckily I woke up before I went off the road on the other side. You really do need to be careful of your own health.
So glad you were at the party with your dad.
I'm glad I spent my dad's last Thanksgiving with him at his bedside. He didn't know it was Thanksgiving because we were afraid he'd get really upset and insist we take him to the nice restaurant where we all had Thanksgiving dinner last year. I asked everyone coming in his room that day NOT to say "Happy Thanksgiving". He laid in bed, I fed him a few bites of icecream and gave him some drinks. It was the best it could be, and it was the last. You'll cherish those last times together too. Lynn

Good morning, girls! Some names I have missed since I don't come to the site often enough. It is always sad to hear what everyone else is going through and now I need your advise.... My husband is 59 and has been diagnosed for about 8 years... I am really starting to be concerned.... His delusions and paranoid behavior are at the point of scaring me. He is not always delusional but it is increasing fairly rapidly now. My husband is suspicious of me and thinks I am trying to kill him or that the caregiver and I are conspiring against him.Today he and I (what was I thinking) are taking the grandkids to see Nutcracker and I really need to get some sleep but can't go back to sleep because I can't stop worrying..... he came into my bedroom at 3:30am and got me out of bed to come into our office to help him make a copy of a check (I had prepared to deposit)... He wanted proof of my spiriting away money or something. I tried to reassure him that nothing was amiss and finally got him back to bed (lift chair) And that was that.... for the moment.... but he looked at me in such a way that I backed up a little out of fear..... Sometimes he looks at me with such hatred.... then he looks at me with such love and true affection and I know he adores me - I can't tell when to have my guard up and when it is safe....I am just waiting for the moment when he takes a swing at me.... Our caregiver (4 days a week - 4-6 hours a day) has warned me that it will probably happen and for me not to over-react.... whatever that means... anyway, caregiver has taken care of patients with dementia before.... my husband can be so sweet and always was very kind... still is most of the time....... MY QUESTION IS - since he is on all the usual meds.......... and we have adjusted them back and forth to try to balance him out.... is there anything I can do........... I don't know what to do.... I don't think there is anything to do at this point. THANKS, CHERYL

Cheryl - I agree with Leone that your husband's dr. needs to have this info. and hopefully he/she can do something, like change meds, that will help the situation. My dad often got this horrible look on his face, balled up his fists, and had he had the physical ability, I think he would have hit something or someone. A few months ago he did whack and scratch one of his caregivers and I think tried to bite her when she was putting him i the whirlpool bath. Luckily for all of us, he was so physically weak and unable to move much, no one gotbadly hurt. But had he still been mobile, could have used his arms more, who knows what would have happened. You need to keep yourself safe for you AND him. I'd call the dr. asap. Good luck, Lynn

Cheryl, I know exactly what you are going through. Somehow I thought my husband would mellow out in the later stages but he often hates me, calls me awful names, is sometimes physically abusive. Other times he can be, while not really affectionate, quite charming. I'm considering tapering him off some of his 'usual' meds. Of course, his doctor is inclined to always add more, not reduce the dosage or number. Since his physical mobility has become so impaired and I can no longer transfer him without injuring myself I may have to place him. Wish I could help but all I can do is commiserate.

I wholeheartedly agree. My dad's negative traits really came out with the Namenda and Aricept, and nothing I did would convince the drs. or CNPs to take him off. About a month before he died they took him off Aricept and a few days before they took him off the Namenda. If your LO is in a facility, it is impossible to taper down or eliminate their meds.
Perhaps these folks were kicking kickbacks or own a lot of stock in the companies that produce those drugs. They were adamant about leaving him on them. Lynn

I have seen in over the 5 or more years with my mom that most of the medicine did hardly anything except what is prescribed for the dementia and parkinsen like symtoms, if you are lucky to find the one that works for your love one. Trying to treat all the flucuations of lewy bodies: up and down blood pressure, runny nose, sleep too much or too little, constipation or loose stool, etc. etc. seem to me very limited. You try and treat some symtom and it flucuates again. Was it the medicine or was it just lewy! Mom is still on namenda, carbi/levodopa and trazedon but in this stage don't know if they are doing anything. The ones in earlier stages of lewy,less is usually better.
At 91yrs mom is loosing weight, restless and halluc. for a couple of days then sleeps around the clock for a couple of day. I wonder how long she can hold up. So sad.

I wouldn't dare mess with Frank's meds, I have no idea what might be helping what. He took Sal-Tropine for 1 week to try to help with the drool. It only helped for the first 4 days and the drooling, hallucination and delusion started to increase. He's been off it for 11 days and he never got back to where he was. He's very confused and doing crazy things.

Tonight my sister & husband and our younger daughter and husband where here for supper, Frank won't eat and after they left he told me I was an a--Hole, drinking and carrying on like I did. No one in our family drinks and I didn't even have a glass in front of me. Another one of the everyday challenges.

Sending you all a big hug today. Sounds like so many need to have a peaceful day today. I'm sorry for what you are going through. Lynn