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My mother is in a nursing home with close to end-stage Alzheimer's. She has lived there a little over 3 years. We are very close and for the past 11 years since her diagnosis, we have been through A LOT together. She has been wheelchair bound and unable to speak anything other than gibberish (with few, rare exceptions) for about a year. Throughout our ordeal, mom and I have always been able to communicate, to laugh together, to enjoy each other's company. Lately, however, I feel kind of like she's drifting further away. I can't imagine a world without her in it, though I know that day will come. I'm not sure what I'm asking. If anyone has anything helpful or encouraging to say, especially if you've been there, please share. If anyone feels it's their responsibility to inform me that Alzheimer's is progressive and that things will only get worse, please don't share. That's not the kind of "help" I'm looking for right now. Thank you.

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((((((Hugs))))))), Christine. No easy answers here.

Have you read On Being Mortal, by Atul Gawande?
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Thanks Barb. No, I haven't read that one, but I'll look for it.
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My Mom's journey with Dementia lasted about 6 years. The last year of her life she went steadily down hill each month. She had become incontinent. I think she realized I was someone she knew but not who I was to her. She was in her own little world. I lost my Mom before that. She would not have wanted to live the last part of her life the way she did. She believed she was going to a better place. She was 89 when she passed in Sept. My memories right now are her childlike way. Being blamed for things and having to clean up messes. Someone said "think of the good times". That's what I try to do. Our parents can't live forever. We have to let them go.
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If all goes well, and nature takes its course, all of us lose our parents (and step parents, and quasi-parents). It is especially sad when children die before their parents.

About half of all married people will lose their spouse. We know that. We even acknowledge it in some versions of the wedding vows.

But knowing those truths does NOT make them easier to accept when we experience them. It is "normal" to lose a parent, and it is also "normal" to fall apart over that loss, and to grieve, and to have anxiety anticipating it. Christine, I am so glad that you have been able to remain close to your mother even through her dementia journey. As she is drawing away, for the part of the journey she must take alone, you are naturally experiencing "ambiguous grief." She is physically present, but in important ways, she is no longer with you. Your painful feelings are "normal" (not pathological) and you will heal.

I experienced ambiguous loss in my husband's 10-year journey with dementia. I understand how very painful it can be. Hugs to you, Christine.

I also recommend the book, On Being Mortal, by Atul Gawande.
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I was very close to my father and I knew - at that time - I couldn't handle his imminent death. I was terrified. And I was such a mess after he was gone. Seriously. Months after he expired, I decided to turn my fear of being without him into his death was for - him - to relieve his suffering. Perhaps you can think of it in this way. Although you may not see your Mom suffering, I think a dementia patient is aware of his suffering, is aware of him being trapped in his mind and body and is aware that he wants to relieved of this, if you know what I mean. This is why I think dementia patients' bodies shut down. It's their choice to let go. Those good times you mention is what your Mom clearly wanted you to remember her in her last years. Her drifting away may be her way of saying it's her time. 
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I say keep talking to her, on whatever level she's on, and even if she doesn't know who you are. I spent lots of time at Dad's MC facility (was there every day) and interacted with almost all of the other residents. Many, many times they talked to me about complete nonsense, but it was their reality. Many times I couldn't understand them, but I would nod and say something like, "oh, my --" or "And are you feeling better today?" and always complimented them on their hair, nails, or what they were wearing and told them how GOOD it was to see them. One of my fav memories was when one of the ladies, who had twins, wasn't cooperative, and I was there with my twin grandsons. She often thought one of them was her own. Well, we asked if she could show him how to do whatever it was the staff wanted her to do, and she eagerly did. My dad passed recently, and I haven't been back yet, but I will def be going to see them soon.
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"I've never been here before".
That was me when I lost my husband way to early. Both my parents have passed. That was a first as well. Now im assisting in care for an elder hospice patient, close friend of the family, and now she is in transition.
I never thought i could do this kind of work, because of the emotional stress. But I know I'm in the right place. Patience and compassion.
You will be fine. There is more to come in life.
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Christine treasure the time you have left with your Mom. You are her connection with this life as she gradually transitions into the next. Hold her hand and walk with her as far as you can, you are very important to her even if she seems not to know you towards the end. Continue to talk about the things you usually did even if she does not respond. Your presence is a great comfort to her. Mom may not want you to actually whitness her deaths don't feel guilty if she passes when you are not present. You may have just gone to the restroom and only been gone a couple of minutes but she waited till you were not there. It would have been her way of still being your Mom and protecting you.
Think of Mom as a newborn and how important physical comfort is to a baby and try and give her that even if you can lie down in the bed beside her or lay your head on her pillow or gently stroke her hands or feet. Hugs and prayers for you and Mom.
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Thank you, friends, for your responses and kind words. One of the things I've hated to hear in this journey is "does your mother know who you are?" I have been asked that by sooooo many people. Do they not realize how rude that is? Lately, I have been wondering, though....
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Yes, I do think she knows who you are. Her drifting away (unless there is a serious illness on the horizon) is her way of letting you know that she'll be okay and most importantly, you'll be okay when her time comes.

My mother is in the last stages of vascular dementia; screaming, combative behavior doesn't want to be touched, vacillates between saying she wants to eat but not actually eating because she'll swat my arm as I try to feed her; keeps screaming she wants to go home...she doesn't like it here. I'm treating her for a UTI. I'm also treating her for the flu; sudden weather changes cause delirium. Oddly, she's not taking in a good amount of water like she always does and this is a first ever. I'm not forcing the water down her. Her doctor wants to order labs and I'm good with this but if she's too dehydrated then it can't be done. It would be torture to her. I've just come to the realization that this is further cognitive decline - and this could be it in the next few days, weeks. I've done all that I could and I won't wonder "What if I had?" I believe she's consciously making the choice to shut down her mind and body. She's just suffered way, way too much and hasn't been the same since my father expired years ago. She's been fully aware of her misery.

I've always believed she's been here for me. My life plan has been coming together. 

We'll always miss our loved ones.

All of us have our "time" to go. Somer earlier, some later.
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This is why they call it the 'long goodbye.' My aunt was in a nursing home and nothing that she said made sense, and she couldn't use right words - she couldn't even sit up in her bed, but I do know that she understood that we were there. I felt so bad for her that I told God that it would honestly be better for her to pass, since I felt she was ready. About a week later, she did. I would say to keep talking to your mom and pay no mind to the ignorant people who think they know better.
I am seeing a big difference in my mother also. Anticipatory grief is very real.
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I think she knows who you are. We used to visit my aunt in a nursing facility. We would wheel her to the front room where there was beautiful sunlight and a view. My mom would then play the piano and we'd gather around to sing hymns. My mom and her sister were pastor's daughters and that music was ingrained in them. My aunt couldn't speak, but would sing (not clearly at all) and cry. It was beautifully sweet. Many many months down the road she stopped singing. We'd still get her in a chair and take her to the front room and my mom would play and sing. My aunti no longer uttered a word or sing, but she'd have tears on her cheeks and she'd get heated up and warm. I think she could hear and process what was happening a bit. Regardless, I liked knowing that we were there supporting her, loving and caring for her even if she didn't know what was going on.

The love you have for your mom is beautiful and even though we know we all eventually pass, nothing can prepare us. The only consoling thing I can think of in all of this, is that it's a blessing and honor to be with the ones who so wonderfully cared for us when we were little and unable.
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Christine, Dad didn't know anyone else at the end, and I'm not certain he 'knew' just who I was and how I fit into his life. But I KNOW he knew my voice, bc you could see the changes in his face; the tension would drain away.
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