A reprieve

ImMaggieMae

My DH had been taking Memantine for at least a year and a half, 5mg in the morning and at night. I was told it was mostly to slow the progression. I never knew if it was doing any good or not. About 10 weeks ago his Neurologist increased the dosage to 10mg in the am and the same 5mg at night. Within less than 2 weeks I started noticing changes. He was talking more, smiling often, sometimes making jokes  and one of the biggest differences was his empathy returned. That was one of the first things that disappeared with the dementia. I could have fallen down the stairs and he would have just looked at me without any emotion. Now if I cough or sneeze, he will ask me if I’m ok or say, God bless you.” He has a caregiver who comes for four hours three days a week.  When I told him she wasn’t coming one day and he asked why, I told him she had an infection and wasn’t feeling well. He said “Oh no,” with genuine sympathy in his voice. When our friend’s DIL had to have surgery last week, he  looked concerned and asked if she was going to be all right.  When I dropped something in the pantry and it spilled and I yelled out “Oh no!” he came running over asking if I was ok. 

He has had urinary incontinence and occasional bowel incontinence since sometime in November, about 70% of the time. He always wears depends. During the last four or five weeks he doesn’t have it during the day, he uses the toilet, and occasionally not at night either. The bowel incontinence has disappeared. His one repetitive behavior is multiple trips to the bathroom during the day, but that’s ok since he actually uses the toilet instead of his depends.

 He has has trouble swallowing for several months and was very picky about what he ate. He lost more than 10 pounds. We were supplementing with Ensure  just to get enough calories in him. His swallowing problems have become fewer and he is eating very well now, even asking when dinner will be ready or what we’re going to have.  He has gained the lost weight back plus a little more. He even ate salmon last night, with me feeding it to him, and he doesn’t really like fish. He has been very cooperative and has never expressed any anger.

He knew who I was, that I was the person who cared for him before, but only remembered my name about a third of the time. He would say, “hey” to get my attention.  Now he always calls me by my name. Friends, the ones that are still around, have noticed a big difference in the way he acts and talks. When listening to his side of a conversation on the phone, he sounded much closer to normal. His memory is still lacking but he comes up with some interesting comments A couple days ago he said he wanted something to drink  I asked him if he wanted ice water. He said no and then paused for a while to think and then said, “I was looking for something on a higher level.” It wasn’t juice. Turned out he wanted chocolate ice cream.

The only drawback is that he occasionally nods off during the day. He will put his chin down on his chest  and fall asleep 3 to 5 minutes, then wake up and act alert. When I checked the side effects for Memantine, one was sleepiness. I switched the 10mg to nighttime and 5mg to morning. This made a difference but didn’t get rid of it. I have permission from his neurologist to raise or lower his Risperidone dose within certain parameters as needed. Since he wasn’t experiencing any agitation, which is what the Risperidone was prescribed for, I lowered the evening dose first. No problems at all. After 10 days I lowered the morning dose as well. Still no problem. He still has some nodding off during the mornings but it was the risperidone that got things initially back to calmness and sleeping through the night. So I think we’re good where we are. The big improvements are worth the occasional nodding off. He seems to only do it when he’s bored, not when other things are going on, like walks, rides talking, watching a tv show that he likes, etc.

I resisted posting about this earlier, with so many on this forum going through such awful times. We too, have had some very rough times, trips to the ER, week in the hospital to get meds figured out, many sleepless nights when he was just bouncing off the walls, and countless repetitive behaviors and questions repeated for hours. I “lost it” many times and screamed at him, only to feel horrible about it later. I just wanted to let you all know that there can be some breaks in all of this. I attribute the changes to those 2 medications, the only dementia drugs he now takes. I know this won’t last forever, but this has been a calm couple of months and while he isn’t back to normal, he is still pleasant to be around.

Dio

Maggie, that's wonderful! Don't ever feel bad about sharing good news. It gives us hope.

I, too, have experienced what you went through. It's these sweet moments that keep me going.

Just Bill

If we can vent about all the weird stuff that happens it is just as welcome to share good news. It actually feels good to type good news. Good for you  ImMaggieMae enjoy the moment.

Ed1937

WOW! That's incredible!! Glad for you. Everyone likes to read about good things that happen. Don't ever worry about posting something good because someone else is having a hard time.

Scooterr

That's great news ImMaggieMae it's amazing how when you find the right medications the difference it can make. It's always great when people share their good news. I hope you have many many more good days with your husband.

jmlarue

Good news is always welcome and should be celebrated. I'm happy for him and for you.

Gig Harbor

That is wonderful that the memantine is working. The short little naps he takes might be just what his brain needs to recharge so they might be a good thing. I hope the med keeps working and you can enjoy him.

ImMaggieMae

Gig, he makes up for it by getting up a couple hours earlier. I just hope these changes last a long time.

Joydean

Maggie May thank you for sharing your good news. We can all celebrate with you and for you! Hope you and your husband have many more good days. It’s a great time to do some fun things together.