Just someone to talk to about Dementia

Lp57$

Hi I am new to this and have not joined a support group until now. My DH has Parkinson’s with Dementia.  He started getting Parkinson’s symptoms around 55 and finally after starting to have hallucinations he had to go to the ER. That was in 2019. So he did not do anything about this until about 6 years, he was scared. He has always been scared of needles and doctors. Anyway after he went to the ER they put him on Carbidopa Levodopa which helped so much with the tremors. They put him on Trazandone to help him sleep because they thought he was just sleep deprived and that is what was triggering the hallucinations. Well it helped for a little while and we had to see a new doctor. I will say one that cared more than the other. This doctor put him on Neoplazid and it started to work. I no longer worry about sleeping in the bed with him and he not accusing me of having a man in the bed with me. That was heartbreaking, but now the neoplazid is not workin.  The doctor has put him on another drug called seroquel.   He has been on that for a couple of days it does help him sleep. Now here is the bad part. He started getting dementia last year.  I have never know anyone who has had it but a lot people have said it is terrible and they are right!!  I have been accused of playing tricks, he has been aggressive because he thought I was someone else! He see me as my sister, brother and a daughter!!  I don’t know what role to play anymore. I don’t want to ask who do u think I am???  I am doing the best I can but it is hard!!  Last year was hard which I know it was for everyone because of the Covid.  Last year our house burned down, my mother died, his brother died and now he has dementia..  Any advice on how to handle this would be appreciated.. thanks

Ed1937

Lp, you have a lot going on. The only thing I can say is that only you know how it affects you. Please don't think that seeing a good therapist means you are weak. It actually means you are smart. As people, we can only take so much before we need help in one way or another. I hope things get better soon.

Rick4407

Hello LP, as with most I'm sorry you have to be here.  My DW is on seroquel.  I have found that the dosing schedule is important to be most effective.  It has a fairly short half life, so the schedule is important to get it concentrated when its needed the most, but also to not have her arrive at the time already agitated.  She get 25 mg 3 times day.  The first at 11AM, the second at 2PM, the third at 5 PM.  This helps her get to the evening on a steady course and then have the strongest concentration when sundowning starts to really kick in.  It's a schedule that works for her.  You may have to figure out what works for your DH.  I call them her memory pills and she takes them very cooperatively.   

My DW was diagnosed with Vascular Dementia and then Alzheimers.  So I also monitor her blood pressure daily and it also has an impact on her.  When her blood pressure is higher (130's/80's) she is higher functioning, low blood (60 over 100) pressure makes her sleepy and much more forgetful.  I try to keep in the 120's over 70's but do not fret if it gets to the low 130's over low 80's.   She is early to mid stage 6.  Mornings she is somewhat rational with simple communication, by lunch no rational conversation and very little actual communication.

I hope you can find a combination that helps your DH.

John_inFlorida

Rick

My DW has VD as well as congestive heart failure. We also monitor her blood pressure daily. There doesn't seem to be a pattern, we will go days with her pressure being pretty good, then several days with it low. When low she also acts much more confused.  Just so strange how there isn't a pattern to it.

I've always been confused about the stages, has a doctor told you the stage? Is it important for me to know what stage? I guess it doesn't really matter, it is what it is. To me it seems like she's stage 5 with some stage 6. Whatever the progression is, its really slow. She had a stroke almost 9 years ago, but was only diagnosed with VD a few years ago, with signs of Alzheimer's as well. 

I guess I'm lucky as she can still communicate well. She just doesn't know our address or phone number. Isn't able to help around the house in any way. So I'm doing everything, which I guess most of us are. She seems to be sleeping more, but other than that I'm not sure I see any changes over the last year.  Is that how it usually goes? Really slow changes?

And of course the virus hasn't helped thing. keeping us even more isolated then we were

Ed1937

Hi John. Here's a link to the Reisberg scale. https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/  Much of the time, people have symptoms that seem to be in one stage, while the other symptoms don't align like that. Personally, I don't put too much trust in guessing which stage my wife is in because of that. If I had to guess, I'd say 5/6. I deal with what I'm given in any day. 

John_inFlorida

thanks, i think your right it doesnt really matter, you just need to deal with what you have

abc123

Dear Lp, Please accept my condolences on the loss of your loved ones and your home. I can only imagine what it was like for you. It is a good thing to have found our group. We are like family and we care and support each other. Welcome to our family. There are many wise and caring people here. We have doctors, lawyers, homemakers, nurses, architects etc etc. Some of our members have many years of experience as caregivers. You will learn a lot here. I’m sorry that your husband has this awful disease. You are both so young. This disease does not care who we are, where we are from, what our life plans might have been. But you are not alone. You have us. And we do care about you and your husband.

Lp57$

ABC, thank you for your kindness..  you are so right this disease is horrible and it does not care who you are and what kind of life you had planned.  It sounds like I’m in good hands. 

LP