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Kathryn, it's sounding like the end stage. It's normal. And it's heartbreaking. But there's nothing you can do. I like the way you softly closed the door and left. Nothing more.
She is not so much in this world now. Much of her is gone. She is letting go. About all we can do is to let them go. We don't know where she is, closer to God? But her body is still here and I think the stroking of her leg was a good way to communicate. I used to rub my Dad's arms and legs and gently tell him that everything was ok, that we would be fine, that it was ok for him to leave us.
I think they can still feel human touch and love. Let's hope your ordeal will soon be over.
It is so awful for you and even, as you say, with her getting the best of care. Wondering if your daughter ended up seeing her at Thanksgiving?
Oh yes, my daughter and all her kids and her husband and my husband - we all went up to the facility and the kids had practiced on musical instruments and so they performed. My mom really seemed to enjoy it. My daughter was devastated afterwards and cried and cried. They are moving overseas and she knew this would be the last time she'd probably see her grandmother.
I just got a message via a rep point which I think was well meaning and I wanted to answer in a private message but I don't know who sent it to me. I will give it a bit to see if the person who sent it will message me with their name so I can respond privately but I wanted that person to know that I would like to respond but can't since I don't know who they are.
KA, my heart hurts for you. I know how hard it is to watch someone you love disappear in front of your eyes. No matter how they treated you or what kind of a person they were before the dementia took its evil hold of them, seeing a once vibrant and lively person fade away is cruel and painful.
I truly believe that one thing that is taken away from them fairly early is the ability to recognize what is happening to them. Now and then they may have a spark of their old selves, or a strong memory of life as it was before, but I think for the most part they are unaware of how different they have become. Maybe this is the only gift they are given with this horrible disease.
Please don't feel bad for wishing this was over, for you and for her. Your heart is in the right place, and you have been so strong and so brave through all of this. I am sure that sharing your experience has helped other folks that are going through the same things. I wish only the best for you and your mom.
I pray every day that I will get the call that the staff went into her room in the morning and she was just gone. I feel terrible wishing that but this is a life worse than death - just laying there waiting to die.
I also feel guilty about not staying long, but then I remember that when she was young and healthy and active, she never nurtured anyone. She never sat by anyone's bedside - certainly not mine, but no one else's that I can think of either. She hated going to visit anyone in the hospital and would barely even go see my dad and about ten minutes after we got there, she'd start jabbering about "Where are we going to eat out? Let's go shopping! I'm bored!" and all that. So maybe it's true - what goes around comes around. Now there's no one to sit with her either, and maybe that's fine. I don't know.
It's just the saddest thing I've ever gone through. I can't even imagine what she's feeling. Is she afraid? Is she sad? Lonely? Blank? Asleep most of the time? Who could know?
Kathryn I'm so sorry you're going through this. We went through it with my grandfather who I loved dearly growing up. He was my one salvation. Every time we went to visit he would beg us to take him home. His home was an apartment for seniors that was full of mold. There was a leak upstairs and his whole ceiling was just covered in it as was just about everything else in the apartment. We often wondered if that contributed to his dementia. We did get a chuckle out of finding a family sized box of condoms in his bedroom. He was 94 at the time. There was no way I could have taken him to my house as my husband was 20 years older and suffering with spinal stenosis and my kids were in that awful pre-teen stage plus I worked full time. He almost set the apartment complex on fire once when he decided to cook a steak on the burner without using a frying pan. That's why they made him leave.
Now my mother is like yours only she left us when we were 3 & 4 years old only to come back into our lives when we were in our early 20's. While we are on friendly terms I have no loving feelings toward her and like your mother, she wouldn't visit people in nursing homes because it was "depressing". This includes my paternal grandmother, who raised us when she wouldn't.
Have there been any Alzheimer specialists that have been able to give you any answers as to whether she is afraid, sad or lonely?
Kathryn you have been a good daughter to your mother, despite the way she was. You may feel guilty but you have to let that go for your own peace of mind. Take care of yourself.
Wow, both the most recent posts brought tears to my eyes. Thank you so much, WoundedSpirit and chiluvr1228. And everyone else who has been so kind and thoughtful. I'm pretty teary lately due to the emotionalism of my mom's situation and the holidays so it is really good to have some kindness thrown my way!
I am so hoping that she doesn't understand what she's lost. Every single time I see her, she is just more and more curled up and stiff and less and less communicative. But the really pathetic thing to me is how she brightens up when she sees me. I mean, her whole face - and she starts rocking back and forth, and she also always, always says something that is definitely appropriate and conversational, so I know that she is aware of who I am and is trying to communicate to me. It just breaks my heart. It really does. See, she has vascular dementia, not Alzheimer's, so I am pretty sure based on my visits that she has not lost her memory of who most people are (she seemed to recognize my daughter and her great grandkids too and she always recognizes my husband as well). She doesn't seem to remember some friends and she also doesn't seem to recognize my daughter's husband so there's some memory loss regarding people but it's not completely gone.
I am thinking about just taking a book up there and sitting in her room reading. Also, maybe taking a bible up there and reading some psalms to her. When my MIL was dying, I read the 23rd psalm to her and she visibly relaxed and stopped struggling and writhing. I think I will also take the CD player back up there and let her listen to some music she loves. She seemed to relax to the Carpenters as well.
I am thinking about just taking a book up there and sitting in her room reading. Also, maybe taking a bible up there and reading some psalms to her. When my MIL was dying, I read the 23rd psalm to her and she visibly relaxed and stopped struggling and writhing. I think I will also take the CD player back up there and let her listen to some music she loves. She seemed to relax to the Carpenters as well.
Great ideas. Ugh, this is so hard to go through. Saying a little prayer for you and your mom.
Five years ago - heck even four years ago - my mother was beautiful, vibrant, intelligent, a great conversationalist, dressed well, had a beautiful and clean and spacious home, my dad was alive and well, and both parents had a wide circle of friends they socialized with. My mom started behaving more and more strangely about four years ago - first she developed an eating disorder which now I think was tied about half to her bipolar disorder and about half to her dementia which we didn't realize was beginning to take hold.
She didn't lose her ability to think clearly about relationships, real estate stuff, estate stuff, etc. till about a year or so ago, though she became alarmingly messy and dirty - chaotically so in fact as many of you may recall. She had begun not to bathe regularly or use deodorant, I believe, probably about a year before, but she knew that was not normal and she lied about that, frankly. But now that she is incapacitated and is bathed every other day by the staff, I can tell that the weird odors were from her being unwashed and probably wetting on herself (which she also denied vehemently).
Two years ago, it was her idea to put her house on the market, and she reviewed the listing contract, and then the sales contract, in great detail and discussed it with me with apparently a full understanding of the entire process. She went to the closing, interacted totally normally with the realtor and the title company, asked clear and concise questions, and seemed to totally understand everything. She also toured various ALF to decide which one she wanted to move to, and we went shopping together for a sofa and some supplies and she was very interactive and gung ho about it.
But it was strange - and continues to be strange - that her mind seemed to be totally clear on so many things and then her behaviors were often so totally out of whack. For instance, two years ago she was suddenly unable to read a calendar or track a movie or television show or tell time - she couldn't read a clock either. She had zero concept of the passage of time or days or seasons or even years, and yet she was very verbally savvy and could discuss intricate philosophical ideas, and even write poetry which was still pretty darn good. She recited one of her long poems from memory at a poetry club get together and that was just a little over a year ago. Now I can't imagine her even saying more than one sentence that makes a lick of sense. She's really gone downhill quickly this past year.
The fact that her dementia is vascular rather than Alzheimer's has made it less predictable and the course has been more choppy. For instance, though she now has advanced dementia, she seems to have total recall regarding who people in her family and small circle of long time friends are. She can also speak complete sentences sometimes very clearly and they make perfect sense, and other times she jumbles up her words, or uses the wrong words to say something.
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There was no way I could have taken him to my house as my husband was 20 years older and suffering with spinal stenosis and my kids were in that awful pre-teen stage plus I worked full time. He almost set the apartment complex on fire once when he decided to cook a steak on the burner without using a frying pan. 
That's why they made him leave.
