Recently got back from visiting my mom. Over the past year, the light has clearly been fading from her eyes. Still knows me easily, but lots more confabulations (confusing dreams for reality) and talking to herself nonstop, occasionally staying up all night talking. She’s aware she’s confused, but not too distressed about it anymore. Somehow the thing that concerns and saddens me the most is the diminished “light” in her eyes, like she is fading from life and her existence. Ever less present.

Never officially diagnosed with dementia, but MD friend read her scan reports and thinks Multi-Infarct. The cognitive decline only started becoming readily apparent about a year and a half ago. Seemingly triggered by a UTI- the delirium subsided, but occasional bouts of acute confusion recur, and then there is the gradual (but also so quick!) decline that must be dementia.

I think my questions are: “How long do we have?” and “Where are we in the journey?” I expect these are questions that do not have medical answers. But hoping some of you out there have related experiences or wisdom that you would share. Or are there any standout resources/ links relating to this topic?

I wish I had a definitive answer to share. I think it would be so helpful to know what to expect and the timelines in which it would occur because it would help make some sense of it all to hold onto. I understand the empty look in the eyes. That in itself seems a heartbreaking loss. I think I also understand doctors not addressing what seems obvious, and it is a bit baffling when you usually look to the medical community to have the knowledge and provide some answers.
From my experience with my own mom, she is now five years beyond the “empty eye” look. Honestly, I did not think she would still be on this journey. Maybe I even hoped she would not both for her and for me. I think what keeps her going is that she has no other major health issues. She still knows who I am, but on occasion gets me confused with someone else during a conversation. She knows she is confused. She has been hospitalized for a couple days for minor issues and her delirium is off the charts. She does not know she is in a hospital and hallucinates that she is in a train station. She frequently tells me she is ready to die and she hates life. She can no longer do the hobbies she always enjoyed. Being ready to die does not mean she will. I feel like she will keep going for a while, and all I can do is watch. It is exhausting and a heartbreak that seems to have no end. I frequently wondered how much longer.
There are stages I have read about with estimated timelines, but they seem to be described sort of high level so I never found them very insightful. I think also each person can be different. I guess I started to take the focus off of my mom’s status and began making my peace of mind and wellbeing more of a priority. That is what has given me the rock I needed to hold onto. Sending you all my support.
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Reply to GingerMay
DaughterfromCA Dec 23, 2022
So glad to hear you’ve been able to tend to your own well-being. Think I have started to also. I remember when the medical crises started, I used to be completely mystified at the advice of self-care. Like, what? How could that be possible, what even is that. I think for months I was caught in an ocean of adrenaline and cortisol. But we survived that initial phase, and now I get that yes, have to stay sane and not sink with the ship.

So you have given me the insight that possibly I’m looking for a map of the emotional journey for us, as well as the trajectory of decline for our loved ones. Most of us probably experience trauma on this journey. I already have, and for me, the worst was even before dementia. But dementia was always the biggest fear about aging, both for her and me- and here we are, in the worst place imaginable.

You’ve been at this a lot longer than I have. So it is encouraging to me that while you describe terrible things, you also seem so grounded and together. Thank you for that, for showing me this is possible. For even 5+ years, whew.
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I know what you mean about the "diminished light in her eyes"
I noticed that with my Husband and when members of my support group show photos of their spouse or other loved one you can see the vacant eyes in each one.
Now, a bit about me and my thinking (wow that could take a whole day but....) I am a believer that there is a higher power, I was raised Catholic but the church and I disagree on many points and neither want to bend as there is no compromise....
Take the saying the "Eyes are the Window to the soul"...
What if the vacant look means that the soul has been taken early so they do not have to "suffer" the dementia.
The family does, most of the time the person with dementia does not "know" what is going on. At least when it gets to the point where the eyes are vacant. And most of the time at this point there is a peace or "acceptance" that the person with dementia has. Or is it surrender?
(I had 12 years to watch the light slowly leave my Husbands laughing blue eyes. And It still hurts after 6+ years.)
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Reply to Grandma1954
DaughterfromCA Dec 23, 2022
Thank you for your thoughts. I agree it can be of good comfort to consider that their experience is not as bad as we imagine, or experience ourselves. And maybe dementia is a process of drifting slowly to “the other side.” Not a bad other side, or even a good other side, just whatever is there, or even not there.

Very touching to hear about your recollection of your husband’s laughing eyes. I am so sorry the journey was so long and painful. Of no consolation, I know, but your words are poignantly, though painfully, beautiful.

I miss the mischief in my mother’s smiling eyes. I was looking through my photos of her this past year, and the last time I saw this expression was in April. I remember there was joy in her face on Mother’s Day, but sad I wasn’t able to capture in a pic. This last couple visits, the one good pic is of her sleeping. Seemed so comfortable and at peace.

On the other hand, had a bit of facetime with her today. No expressive looks, but she told me not to worry about her, that she is “very happy.” And thanked me for extending her life. I smiled big, but wanted to cry. She’s in there yet. And I’m slowly losing this amazing mother who wants to put me at ease about her and her decline.
My mother had what we think was vascular dementia which lasted 6 years after she was diagnosed. She suffered a sharp decline in her last year of life, when she had a hard time understanding language, inability to use the phone, decreased appetite, increased falls, lots more general confusion and periods of being incoherent, plus she was leaning dramatically to one side in her wheel chair leading me to believe she'd suffered small strokes. Her CHF exacerbated with swollen feet and ankles, chest pain and she developed pulmonary hypertension. Her Sundowning in the afternoons got horrendous, too, to where she needed Ativan just to function without freaking out. She was using air freshener to clean stains and trying to turn the phone off with the TV remote. She lived in Memory Care Assisted Living and thought she was living in a hotel where the "girls" were taking her to a new and lovely hotel every night that happened to have all HER stuff in it. This was after they'd treated her to a fancy dinner in a restaurant and a show in a club, which exhausted her. This is known in the dementia world as Confabulation.

I don't know if your mom's journey will mimic my mom's, but that's just to give you an idea of what went on in her last year of life. It was a very rough ride.

I suggest you read this 33 page booklet which has the best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

Wishing you the best of luck with a difficult situation.
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Reply to lealonnie1
DaughterfromCA Dec 22, 2022
Thank you so much for your experience- I totally understand everyone’s will be different, but just trying to get a sense for what might happen. I think it helps even just to learn the terms- I thought of mom as having “delusions” for a long time, and somewhat recently realized “confabulation” was more appropriate. Matters insofar as I really want to understand what she is experiencing.

Thank you also for the book rec and hope you don’t mind, I may stalk your post history.
My husband passed on 12/28/2022. (He was in a Skilled Nursing facility). I was called a few days earlier since I went out of state to spend Christmas with family. They said that he was suddenly declining. I had just been with him the day before. I was able to feed him, he sipped his milk through a straw and helped him sip all his juice by putting the cup to his mouth. On Christmas Day, when I entered his room, I was devastated at the way he was. His eyes were fixed and he was no longer responsive. He has been on Hospice care and they continued with their comfort care. During the next 4 days I was with him….you could tell he was slowly slipping away. His eyes were either fixed or just barely open. Then when I got there the last morning, the hospice nurse had just seen him earlier. He called me as I was sitting next to him and he advised that after evaluating him, he only had about 12 more hours to live. I never left his side and exactly 10 hours and 59 minutes later he passed. It was very gentle and peaceful. His breathing was never labored. (I was told that the morphine they were giving him helps with this). Within seconds his eyes closed and he went home to be with the Lord. The only thing different I noticed when his time was eminent - both his arms at his side sporadically stiffened up a bit. I hope this helps you prepare when the time is nearing. I felt joy at his passing. He had been in Memory Care then Skilled Nursing Care for several months. The Long Goodbye…’s tough.
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Reply to Kaycoocam1972

Good Morning,

Occupational Therapist, Teepa Snow, has a great Caregiver booklet out on the different kinds of dementia's and their stages along the way. It's very informative.

Also, she has YouTube videos that are helpful. The flat affect, no expression, staring off--no eye contact is part of it.

When my mother asks, how is this going to end, I just respond, I'll be by your side holding your hand! Isn't that what any one of us would want?
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Reply to Ireland

My dad's early dementia started in his late 80s in early 2015 when he still lived in his house to now at age 96 in memory care, full time in a wheelchair. Cant believe we're coming up on 8 years. He is well taken care of. The facility is managed by an RN who keeps his diabetes under control and he has a geriatric psych who meets with him every few months to manage his anxiety meds. She says his dementia is getting worse. He is really not capable of carrying on a conversation anymore and he is fixating constantly now. He really does not have a good quality of life but just keeps hanging on. Yes, that is a question I often have - how long can he go on like this?
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Reply to Babs75
DaughterfromCA Dec 22, 2022
Intimately familiar with the “how long can they go on” sentiment. Thinking about 8 years tears me up. Lately I think I’m more in the “how much more time do I have with her, until she doesn’t know me” zone, but also know it can change on a dime. Probably it’s just opposite sides of the same coin.

All of it is so brutal, for them and us. I know my most important task right now is to accept the uncertainty, but this is somehow the most emotionally challenging thing for me ever, this uncertainty regarding my mother.

I wonder if you are exhausted. Hope you don’t mind that I will be looking for your old posts. I think I have learned that where I am, there is a lot more to learn from the experiences of others, than from medical guidelines.
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No answer is possible, if someone says it is they are mistaken. Just wait and do not feel guilty. Guilt seems endemic but helps absolutely no one.
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Reply to Agentsmith
lorrising Jan 3, 2023
Wouldn't it be wonderful if being told "don't feel guilty" actually resulted in not feeling guilty? I get so tired of that bit of advice. It is more helpful to encourage people to think about what they've done and the choices they've made and ask themselves if they could have done anything differently. When you realize that you have done your best in the circumstances you were in then you can diminish regret, which is the true source of the guilt many people feel.
So sad. My moms journey began 3.5 yrs ago. She went to memory care for 10 months {did not know some of us} and got better …enough for a move to Assisted Living. She has Lewy Body Dementia..some days she is mildly confused and she always has memory issues. Some days she looks 95 some days she looks 75. She is 89 soon. She has few health issues and I expect this can go on for many more years. She has no distinct stage. I looked for an answer as to when does this end and have learned there is no answer. God will determine that. P.s. I no longer recognize this woman as my mom. The mom I knew has left. I just go forward. A tough road indeed. Good Luck.
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Reply to Sadinroanokeva

At age 90 in 2009, my mother was quite active and slightly overweight.

Then in 2012, she suffered mental decline, several fall injuries at home and much weight loss until late 2013 that sent her into rehab, then some nursing homes. Was using a wheelchair to be escorted around at age 94 but still quite lucid and could get out to a park.

Then in later November 2014 at age 95 in early, she could still talk but slept 20 hours daily with several medical conditions and further mental decline. She did have some more falls in her private room when she refused her to use her walker. Finally, Mom stopped going to the dining room for meals and required oxygen for comfort for her heart failure. The POLST documented a DNR because of her heart failure condition. Had to have meals delivered to her room, but she stopped eating and drinking when items got stuck in her throat. Death occured in almost three weeks with oxygen application.

God only knows when death will happen. It's about taking it one day and minute at a time with prayers. Not like looking through a crystal ball.
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Reply to Patathome01

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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Reply to Stacyy

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