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I understand where you are and how hard it is. My mom has a form of vascular dementia called cerebral amyloid angiopathy which involves lots of small bleed spots all over the brain - MRI lit up like a Christmas tree description someone gave is exactly what mom’s brain imaging looked like.

Dad also died in May of Alzheimer’s and his was a rapid and aggressive decline, though in hindsight he was dealing with some dementia for years and I chalked it up to his personality or normal aging behavior changes.

I have posted on here about my parents’ decline a couple of times over the past year. Mom is in memory care and needs heavy support 24/7 to do everything from bathing to finding her room after lunch. She knows who I am but in a vague kind of way sometimes, and she confuses my husband for my son, or my son for my dad, on some days. She was diagnosed about two years ago and moved to memory care a year ago Thanksgiving.

Mom and I were close and she was everyone’s rock and the glue that held us together. Amazing grandmother to the kids. So I understand your fear and great sense of loss. It is a terrible thing to face when you love someone so much.

The worst part of the past traumatic year was the severe emotional disturbance mom experienced. My dad also went through this. I don’t know enough to know how common that is. But she became highly agitated, distressed, angry and sobbed all the time. She tried to harm staff. They had to use antipsychotic medication in large doses to manage the behavior. My dad was the same, at the same time, and it was like a living nightmare. He was urinating in the hallways and drinking shampoo within a year of living independently.

Now it seems like mom is in a different place every week. Some weeks she is more calm and peaceful. Other weeks she is anxious and tearful. Some weeks she is physically stronger and others seems more frail and off balance. But she is no longer on that strong medication and she is overall much more stable.

She put toothpaste all over her face thinking it was lotion last week and broke out in a horrible rash. And she speaks with increasing confusion about time and place. When I asked her a month ago where she wanted to have lunch she said “Pet Smart sounds good.” So we ate lunch and then went to see the pets at the pet store. She is losing weight and has very little interest in food, though the staff are great and work hard to encourage her. But she always gives me the biggest hug and tells me how much she loves me every time I see her. We are still there.

It’s a heartbreaking journey. I’m so sorry you’re on the same road. Try to take care of yourself.
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If you ask the rest of the family they will tell you my mom is already gone. She will be 96 later this spring, is wheelchair bound and the only thing she can do is feed herself. She is still my mother and I love her and know she loves me. I tell her that every day. I don't live in the same town so I only get to see her a couple of times/week. Those times are precious. Mom can't carry on a conversation, or even reply to Y/N questions, but I hug and kiss her and she is happy to see me. DaughterfromCA, enjoy her while you have her. Focus on the love you have, not what you (and she) have lost. She may hang on for years or be gone too soon, no one can tell. Short visits are better than none. Know that she won't remember you were there yesterday. All she needs to know is that she is loved, and you can give her that.
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Momsonlychild Jan 2023
I totally agree. Once we learn to focus on the moment than the loss we then learn to just love the time we have. It’s a struggle for me too wondering when it will be the end. My mom hasn’t known me for a long time. She’s bedridden now and her memory is just a second. She sleeps a lot, struggles to talk. As my mom she’s been gone a long time now. But if I can give her a flicker of moments that she feels love then that’s what I’ll continue doing. Hospice is coming tomorrow for an evaluation. For my mom I wish she’d pass away, where she’ll be whole again. But for me it’s a struggle, torn. Although I’ve been grieving for quite awhile I don’t think I’m truly prepared. Sounds odd but true.
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This is a post and comments I have been looking for, but rare to find such common experiences. My adult son who has severe disabilities and Alzheimer's with a mixed (unknown) dementia. He was diagnosed just 3 years ago, but often that means it had been going on some time, just not diagnosed or even thought of. He's only 43, so it is also considered "early onset". Since it is so hard to find knowledge and support for a young person who is in this condition, I search and lurk through forums like this one. My son has more in common with a frail, elderly man of 87 in a wheelcair!

But like many people in this long decline, he has times where he is lively and has the interests of a very young man! He loves the Adult Swim cartoons, especially Rick and Morty. And he is a whiz at naming the song title, lead singer and band after just 15 seconds when he is enjoying "his music" on the radio. This guy goes back and forth all the time as if he switches between focused and oriented to the nonsense babbling of dementia. He's still "in there" but I too wonder where he is at on this journey. His doctors cannot speculate at all what to expect because he had so many neurological surgeries since birth with congenital brain damage. Most "information" on dementia is collected from those who "had a normal brain" before the dementia began. It sure is a limbo, and it's slow but steady.

I had never before thought of "losing the light" in his eyes, so now of course it seems obvious that will come. We have found that after he was hospitalized this last Fall three times, he is declining slowly but steadily, and this is more obvious. He went through "acute delirium" from a hidden constipation and infection episode. Glad that is gone! He had hallucinations big time from a anti-convulsant he had taken for 12 years and suddenly that happened and back to the hospital. The hallucinations are mostly gone but pop up a few times a day. But they are no longer agitated hallucinations. (Those are rough!). He's still got some delusions, and had begun confabulations about 3 years ago, still continuing.

The good side is (wait, the "good side"?) he is relatively happy and calm. He's eating well and still knows us all and dotes on his dog. He's got a solid routine daily and we have caregivers daily helping him (and us!). I hope you will come back to this forum @DaughterinCA, because it is comforting here and it always seems there is a post and conversation here that help us as family and also family who are caregivers.
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ConnieCaretaker Jan 2023
Hello: I was shocked to read that your son is only 43 and diagnosed with Alzheimer's. I believe I have read about this rarity and heard them say there is a strong connection with concussions. Did you have a neurologist diagnose him?
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The light is gone most days now in my mom’s eyes. It helps to know I need to be more aware and gentle at those times

its so hard. I love my mom, she was my best friend for a long time. But she’s gone, in her place is a fading woman who is rarely aware of life anymore

I find myself hoping she’ll see my dad (passed 2015) and move toward him peacefully. I wish I could help her, but I know she’s already gone. I can only guide her this last little bit


hugs
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hauzrlisa Jan 2023
I am going through the exact same thing. In my case, my mother has lung cancer that's gone to her brain. It's tough when it's a parent. I am very close to my mother. Lost my father in 2013. I suffer from anticipatory grief and being a caregiver (shared with my sister) is draining and very sad. I try to focus on the "here and now" and the precious few moments we share as I secretly hold back the tears. Hugs to everyone!!
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DaughterfromCA: Prayers sent.
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Dementia/Alzheimer’s is an awful disease. It has been written that it affects more women than men. It’s also called the slow death. Your Mom’s symptoms of confusion will worsen over time. However, you can work with her doctor on getting her on the right medication for her. It’s usually trial and error at first with increasing doses as time goes on. It can help. Have her checked for a UTI and other illnesses. I would recommend getting her things to keep her mind occupied. Puzzles, LEGO’s, an apron with lots of pockets and put little things inside-whatever she likes. Try and get her out in the public often so she can see people going to and from. She may only watch, but it helps to stimulate her mind. Take her out for lunch, or shopping for clothing or cosmetics, if you can manage her. You may have to devote some days just for her. It may be soon time for a memory care facility. You can also install cameras that connect to your phone to help monitor her. When her confusion symptoms increase and she can no longer keep herself clean, her mind has taken a rapid decline. If she eats, drinks, and sleeps well, she could live a long life with severe mental decline. Lack of enough sleep, food, and water, can definitely escalate her condition rapidly. Maybe she needs mild medication to help her sleep at night. At this point with her condition, she needs someone with her daily. Hurting herself, catching the house on fire, and self neglect are the issues of concern now. Care is costly, averaging 10-12 thousand a month. I would contact an elder care attorney, Social Services, etc. It will soon take more than one person to care for her-often a team. It is hard to see your loved one decline, but it is the natural process of life. Enjoy what time you have, and definitely get help for her care. ❤️
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1. At this point in our human knowledge, there is no way to know how long someone will decline. My mother lived 8.5 years in a nursing home, despite being severely limited. My being there with her for 5.5 years may have extended her lifespan, but, again, that is only a possibility.

2. "Diminished light in her eyes." (a) This can be from disengagement from this world, something that often happens towards the end of life. (b)This can be from loneliness: For about 6 months my mother had an imaginary friend or spirit guide UNTIL I moved 3500 miles and spent every day with her for the next 5.5. years until she departed; once I arrived, she never spoke of him again. (c) This can be from her cognitive or physical impairments. (d) ???
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Hi,
im new to the journey of caregiving, but my Moms geriatric MD gave me this booklet when she was diagnosed. It does list symptoms and places them into stages. As you know, each person is different, but it may help give you a guide.

it's on Amazon for $17

Check this out!
https://a.co/1AY79XO
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elisny Jan 2023
Also, people can search for "Understanding the Dementia Experience - ALZConnected" for a 2015 PDF that is very good. The Alzheimer's Association also had good information and training.
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December post.
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Thanks to all who have posted since I last did. I visit this forum occasionally, but was somehow unaware this particular thread had continued. By way of update, while the light in her eyes is still diminished, my mother continues to be mostly lucid, and is now physically quite stable. Occasionally even especially alert, and in those moments, is quite intent (insistent?) about letting me know how much she loves me. Which is special, because I didn’t grow up in a family which actually spoke “I love you” a lot.

I definitely cherish any time I get with her, whether through actual visits or facetimes, and whether she’s cheerful or grumpy- I guess when I first posted this, I was mostly feeling fearful. And sometimes have wondered how long this can go on. She’s been close to dying a number of times in the past couple years (not from dementia), but has rallied (really rallied, not end-of-life-type rallies). There have been so many ups and downs and now with dementia in the picture, unexpected crises and behaviors.

But for the moment, I am feeling grounded and accepting this is what love and life can look like. And learning (over and over) that a very confused and cranky Tuesday doesn’t mean she won’t be super joyful on Friday.
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CaringinVA Jun 2023
Thank you Daughter for stopping back by to update us. Grateful that you are feeling more grounded and confident and you walk this part of the journey with your mother.
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