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Toni Asked December 2009

My dad has dementia and keeps saying he "feels like he is not here". What is he trying to tell me?

Also, last night he was a bear, yelling at me and carrying on. He is frustrated with himself and it is starting to show-needless to say I am sleep deprived- but I will not put him in a home - the last time he was there he got pneumonia from being sedentary in bed-

EXPERT Carol Bradley Bursack, CDSGF Dec 2009
He is confused about reality and he knows it. He's frightened. You will need some help with this.

All nursing homes aren't bad. Do you have choices? I know some parts of the country don't have many good choices, which is disgraceful, but true.

I'd get him to a doctor to see if medications can help him. There are some that do help many people with dementia. He seems to be showing some changes, so it's probably time for a checkup. In-home help may work or may not. If it does, you could get some sleep. Please talk with his doctor about your options, and also check your state's Web site under aging services.

Carol

EXPERT Deanna Lueckenotte Dec 2009
I agree with Carol's comment posted above. Your dad is trying to communicate that he knows he is not truly who he remembers. In regards to the behaviors he is exhibiting try to keep a log of the behaviors with the who, what, when, where concept to see if there is a pattern and what may be causing his outbursts. Educate yourself on reminsincing techniques, validation therapy, therapuetic lie technique as well as other ways to communicate with your dad. Remember to always enter his reality wherever that may be. If he is having a disoriented moment and thinks his mom is still alive(and she is no longer living) for example then that is where you need to be. Reality orientation is not always the best technique to use and it can put your loved one in a failure environment which in turn can increase his behavioral outbursts.
Deanna

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cmarlein Dec 2009
My mother, who has dementia, sometimes says "I don't know who I am , or what I am or why I'm here..." at times when she is very confused...she says it less in the last few months, but is increasingly withdrawn and quiet...I think she is afraid sometimes of saying the wrong thing since she is often so mixed up...and in company she is especially quiet...I wonder how much of a conversation she can follow. I used to think I'd NEVER put my mom in a nursing home, but we now have her on a waiting list...which will be so difficult when the room is ready...but it is a very good nursing home...I'm hoping she will eventually feel secure there and she will receive the kind of care I do not have time to give her...since I'm balancing a husband, full-time job and 2 teenage boys...I want the best for her of course, but I'm starting to think an enviroment where there is always someone to answer her needs and deal with the dementia as well as her chronic health problems...she is unable to move on her own...will be a positive thing. It has really been hard for me and my husband to put family things on hold to be there 24/7 for her...wish us luck and prayers...Christine

hapfra Dec 2009
Hi Toni~It appears that you have received some excellent ideas-and now I guess for all parties concerned, your caregiving journey takes you into the realm of 'follow through'. I could not have made better suggestions that were previously posted. Caregiving is more difficult than many people realize, until they themself have been in the situation like many/ or most of us here. I would suggest you keep on seeking out answers as well as support-and remember your own health as well. Good luck-during this the Holiday Season. Hap!

lcs Dec 2009
I have often wondered how my mom must be feeling now that she has dementia so I was very interested in reading that Toni's dad says that he feels like he is not here and that Christine's mom says that she doesn't know who she is or what she is. My mother often LOOKS like she might be experiencing these feelings but she is not the type to want to talk about feelings (hers or anyone else's). Thank you, Toni and Christine, for sharing with us what you have heard your parent say.
Christine, my sisters and I held off putting Mom in a care facility absolutely as long as we could but on November 1st of this year we did the deed. Now, almost two months later, we know we have done the best we could for her, ALL circumstances considered. I trust you will come to the same realization soon after your mom is placed in a nursing home. God bless.

cmarlein Dec 2009
Thanks Deanna for your good wishes and thanks LCS for your kind words. It is good to hear that after nursing home placement you feel that you have done the best thing for your mom....my biggest fear, of course, is that mom will do worse or be very lonely...although I do plan to be over there often and to take her to my home for visits when possible. My mom is also not one to talk about her feelings...in fact, as I said, she is more and more withdrawn...however, she did express that she just "doesn't feel like a person anymore"...she feels like a "nothing" as she calls it...part of this is depression, missing my Dad, who passed away almost a year and a half ago...but she was like this even before that, when he was her caretaker. So, I just try to be there for her and try to understand...it is very difficult emotionally, watching her change...she is SO different than she was...I'm glad to have this forum to exchange thougths with other caretakers...best to all during this holiday season...hang in there! Christine

SecretSister Dec 2009
My mom has been saying, "I'm a non-person," too. She has had a lot of changes in the last year. Does this mean they don't recognize life as they once knew it? Sad when life "happens" to them, against their control or wishes.

lcs Dec 2009
A question for K. Gabriel Heiser. Gabriel, it's a trivial question but .... I have been chosen by my mother to have acting power of attorney. The question is a matter of semantics - do I HAVE acting power of attorney or AM I acting power of attorney? To be or to have - that is the question :-) Thanks.

lcs Dec 2009
I am sorry, everyone. I should have put my question to Gabriel as a new discussion. I think my brain must be a bit addled right now (even more than usual :-).

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