Mom was diagnosed w/ stage 5 Alzh, back in Dec. It was clear that she could no longer live alone and needed 24 care. Through a series of events(she went to hospital @ the end of Jan. w/ a small heart attack, spent 4 days there)...then straight to NH . She has never asked what she is doing in NH or when she gets to leave, for that matter. The NH is very close to me, so i try and visit, every day or every other day. She is not ALL ALONE anymore, at all and she actually kind of likes it there. The problem is, the workers tell me that she sits by the front waiting for me to visit ALL DAY...and when they tell me this, it makes me feel very guilty. When i go to visit for coffee or watch a movie, or sit w///// her she ALWAYS says "Im SOOOOO glad you are here...i thought you were dead" the CNA's tell her that I am at work, when she worries about me.. Any suggestions on how often to visit or does she even remember when i visit?? (her alzh is progressing and sometimes she knows she knows me, but dont think she always knows im her daughter...she just KNOWS im someone who cares. I might add there are very friendly ppl that work there and lots of things for her to do. She chooses not to participate . I feel responsible for her happiness...HELP!!!

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Dear sweet story was thank you from the bottom of my heart;) Thank God, I try to live a very spiritual w/ Gods help...I, too am working through this process. Also, thank God for the women on here and there willingness, like you to share their experience, strength and hope. This journey started for me, last March and anyone who goes through this knows, they are in for a ride. That was Great advice I first got from Jennagibb!! from finding out why I was crying as soon as I left Moms, was because I was in fact, beginning the mourning process, while she was still alive and here, in front of me;/ I know in my head that power and control are ONLY an illusion, but , my head doesnt always match my heart, so thank you !! I seem to now be moving into some sort of acceptance, but who knows?...i have started taking YOGA and It has helped me sooooo much. I have stopped beating myself up....what a gift;) See, my Mom doesnt "guilt" me or say why arent you here...but more like Thank God your here!! Im so glad to see you and today, she told me that she was empty, except for me;( I told her when I feel empty, I talk to God....she had a puzzled look on her face. I told her that i wish icould be there w/ her all the time and she said "i would never expect u to do that"...shes just very sweet and very lost. Thank you, again. Patty
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Dear Partricia1,
Gosh, your story is practically the same as mine. And jeannegibbs gave me perfect advice when Mom passed cause I felt as if it was my fault for not visiting for several days. I am the youngest and favorite and most loved of the 3 siblings. Mom used to wait for me ALL DAY LIKE YOU to come every day-which I did. Her hands would fly up like a child and she would cry in happiness when she saw me and tell me how much she loves me and misses me. When sis would go and visit all Mom would do is blandly with a straight and say, "Where's Susan?" Sis would say, "but I'm here." But it wouldn't make any difference. "Where's Susan" Mom would ask. I visited every day, bought her favorite foods, brushed her hair, curled it, put lipstick on her, brushed her retainers, etc.....took her on the wheelchair to go outside and see the trees, eat out in the dining room, roll her around, and massage her legs and feet, etc...But by the time the afternoon rolled around when I left she would call me at home and plead to me about why I never came to visit her for 5 days!! If you can't visit, call her as jeannegibbs said, that's what I did. Mom had no sense of time either and that made everything a lot worse.
Do not feel responsible for her happiness, I felt the same way too, but we DO NOT HAVE THAT KIND OF POWER. We only "feel" that we do. I know thats easy to say and difficult to do, but I've been in exactly the same shoes as you are in now so I can say that I speak from experience.
I asked every body if I should just jump in the car at her beck and call and everybody told me not to. But now I regret that. Even though she would of forgotten that I came, at least I could give her that love and comfort and sit while she fell asleep for that short amount of time that I could give her love and comfort even if it was for a little while. When Mom passed I felt like dying too cause I felt like I caused her dementia to advance so rapidly and her body reacted in panic, fear and pleading that it affected her body and I felt totally responsible for her rapid decline and death.That could be true, but nobody has the power over life and death, only God does. The pain was excruciating. I can still hear her pleading and panicky voice on the phone and I believe that it will be my bane for the remainder of my life. its just that now, its not controlling and killing my life and mind like it used to. And jeannegibbs gave me such wise council when I asked her about it that it made me feel a whole lot less responsible. Even my therapist said so. I still feel lots of regret and guilt, you know: the should of's could of's, would of's, but its not killing me like before. And it was killing me, believe me!!
Even if I stayed 24/7, and went to the bathroom, Mom would forget that I was there. During her last days I was sleeping over at hospice next to her bed and she even forgot about that. but I did it cause I love my Mom with the deepest of love and wanted to be by her side when she passsed, and I was. I was holding her, speaking into her ear that Jesus is waiting for her and I know that she heard every word I said. She was so beautiful when she passed she looked just like she was sleeping. Her face was so peaceful and happy it surprised everybody, even the nurses, CNAs, and the whole family. I was so blessed to have been there hugging her while she passed I will never forget it and am thankful for that everyday of my life.
So Patricia1, just do all that you can do and you cannot do any more than that. Your Mom has happiness when you are there and you cannot control nor do you have the power over life and death and her happiness when you cannot be there as much as your mom wants you to be--like my Mom. Dad passed 6 months before Mom so I had a double whammy in 2012. Thats why it added to the instense pain I felt about Mom. We were not there when Dad passed and he passed all alone and in pain too. Mom was on morphine but Dad wasn't.
Last year will always be the most difficult year of my life and its not over yet. There's the house to take care of, the realtors, appraisers, lawyers, me renting an apt, looking for a new job at my age.....its frightening......
My prayers go out to you and all the women who give you great council as they did for me.
Helpful Answer (2)

She might forget that you're visiting and time has a different meaning to her. Sometimes it helps to leave a note in a journal about your visit. It might bring her comfort to hear about your last visit and know that you were just there. The staff can use it as a way to cue her a little.
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Patricia1, you know you are not responsible for anybody else's happiness. Your advocating for Mom and seeing that she has good care and visiting her often contribute greatly to her well-being, but you cannot ensure that she will be happy every minute of every day.

It is very common for persons with dementia not to be able to track when they have visits. They complain, "My daughter never visits me! I haven't seen her for months" a half an hour after the daughter leaves. You could visit twice a day and still not satisfy her, because she wouldn't remember you were there. This is because she has dementia and that is Not Your Fault. Please ditch the guilt.

Be glad that you are not hundreds of miles away. Visit her according to your needs and your schedule. If that is three days in a row and then a gap of four days, so be it. Can she still use the telephone? It MIGHT help to call her everyday, whether you visit or not. This has the added advantage that she is more likely to recognize your voice than your person. If she is thinking of you in your early twenties or your teens, seeing you as you are now is confusing. Hearing your voice is apt to be comforting.
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