New to the Group(9)

PaulineMarie

Hi, My husband was recently diagnosed with Lewy Body Demenia.  He has Parkinson's and was diagnosed in April of 2019.

Most of the time he doesn't know where he is and sometimes who I am.  He has hallucinations and delusions.  He gets fixated on something and it can last for hours or days.  

Night times are the worst. He walks the hallway from the bedroom to the kitchen.  I have set up ring cameras in my den to cover the hallway and the back doors, one in the living room to cover the front door.   I have a lock on me medicine cabinet in the kitchen along with the pantry and the refrigerator/freezer.  

My frustration is when he tries to do things that I know he can do but doesn't.  He will get in and out of bed a lot day and night, but when it is bedtime he says he can't get in bed.  

After reading some of the messages I know my life could be worse, just feels good to know there are people who are there if I need to talk.  

Thank you all,  You are all in my prayers.  

M1

Welcome to the forum, you've come to a good place.  My sister in law died of Lewy Body, not diagnosed until she was terminal.  She had primarily parkinsonian symptoms including the Lewy Body Lean (not being able to stand up straight was first and most persistent symptom).  

There are many, many wise and kind caregivers here.  Hope you'll find it helpful.  Hard to tamp down your expectations of behaviors--"can't" and "won't" are easily confused at the middle stages.  

Ed1937

PaulineMarie, welcome to the forum, but sorry you have a need for it. We have another member, Jjaz, who posts on these forums, and her husband had Lewy Body dementia. She is now very active on another site that you might also be interested in. https://groups.io/g/LBDCaringSpouses  

VKB

Welcome !  You will find very kind and knowledgeable people here.  

I am wondering whether when your husband thinks he can't do something (you know he can do), perhaps at that moment he really can't remember he knows how.  Perhaps you will be less upset if you just blame the dementia.

I remember being upset with my mother at first, but little by little I understood it was the illness.  There is a bit of peace found in that.

PaulineMarie, I prayed for you and your husband.  Peace always.

Evie Handville

My mother has dementia, maybe frontaltemporal, not sure.  I moved to Los Angeles from Colorado for the sole purpose of providing support to her and her partner.   Her partner is hostile and uncooperative, he sabotages everything I try to do to help them.  My mother is paranoid, hostile, has rages, has severe memory problems, confusion, etc.

I have been here for almost two years.  At this point I am very unhappy, depressed, have problems sleeping and I fear for my own sanity at this point.  I feel like I can't take it any longer.  I wake up with a suffocating feeling of dread.  I don't have community or friends here.  I don't know what to do for myself.

It's possible that the two of them may move to Idaho to an assisted living facility close to his family.  At first he said he wanted to, then he changed his mind, now not sure.  Mom does not want to move out of her house, yet she wants to be with him.  I know that if he left she would completely lose it, yet she will completely lose it if she has to move, even with him.  There is no win/win here.  I think she will probably cause so much trouble that the facility won't even accept her.  If we do get them moved I plan to move to Idaho as well when my lease is up.

mommyandme (m&m)

Evie, you may get better response if you post a new thread with the green button, Add Topic, at the top of the Caregivers Forum.   

So sorry you find yourself here but welcome. 

Brelandcla

 Primary Progressive Aphasia

I am my moms primary care giver.  She has Primary Progressive Aphasia.  She can only say a few words and really can’t communicate.  She will say the same word over and over again and sit there crying and getting upset.  I’m not sure how to handle that.  Is there any other caregiver that deals with this?

Thanks.