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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?

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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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December post.
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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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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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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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DaughterfromCA: Prayers sent.
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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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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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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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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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You are certainly not alone to wonder - how long do we have? what will happen? what will it be like? Will I be tough enough to handle it or will I go to pieces? I ask myself all of these questions while I stand by my soon to be 96 year old mother watching her decline. Right now it truly is a long goodbye that I take one day at a time, one foot in front of the other…. It is hard not to be hyper-vigilant watching for signs. I think it is somewhat out of self preservation. We all want time to adjust and adapt. Even if we are relieved for our loved one, it is still a loss.
I miss the mother I had, but once in a while I see flashes of the mother I knew. Best wishes on your journey.
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I don’t think you can really pinpoint answers to your questions. Watching a loved one decline is something people simply aren’t prepared for. We want answers but there aren’t any. My brother was in hospice care for eleven months for glioblastoma—brain cancer with a very poor prognosis— and lived much longer than anyone thought he would. At first I thought he had early onset dementia. This is where I learned about ambiguous loss. The person we knew is disappearing—and their real self is gone. Anticipatory grief is grieving for someone we know is going to die but hasn’t yet. Honor that and don’t resist it. Going through that grief will prepare you for their death. Hospice made the last months of his life probably some of the best in his life and really helped his daughter and me. It doesn’t sound like it’s time yet for your mom. But don’t wait for the very end but use their services to help your mom and you. Medicare covers the cost of hospice. They will provide both emotional support as well as learning about your mom’s end of life.

As for when, I learned that even the seasoned hospice nurses didn’t know the answer. They were far more experienced with seeing signs of impending death than doctors, but still couldn’t predict when until it was close. But they do know the signs. I live 1600 miles from my brother so it was a matter of getting the phone call that, now’s the time, and immediately booking a flight. However after I got there he rallied for a month or so, and then took a serious decline after which he died a couple of months later. He gradually could only acknowledge me and his daughter but never spoke after that and we had to feed him. He had been a great conversationalist, and taught his daughter about life. So there was a lot to grieve. A nursing home staff member called early one morning to say based on her experience he had only a few hours left and I was with him when he passed.

You don’t say what her living arrangement is but it may be time to find an appropriate facility for your mom if you haven’t already. Making end of life plans early on will be a lot better than when there’s a crisis.
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Alzheimer's is a progressive disease that will take you on a roller-coaster ride. Getting a diagnosis is imperative and, at times, difficult to get. Best to set up appointments with a Neurologist and Geriatric Psychiatrist.

You might benefit from setting up an appointment with a Geriatric Psychologist who can educate you about the disease and make suggestions on how you might cope with the whole painful situation.

Also, please make an appointment with an Elder Law Attorney to get Mom's final wishes documents in order. While there, listen and learn how you can start making your own end-of-life wishes.
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hard to say one day at a time before full time nursing home care needed, be pepared to take care if she becomes inconcinent.
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Please don't sit back and wait, please set up an appointment with a neurologist and Geriatric Psychiatrist. The timeline is unknown, the fact is that the distease will progress, so it is always better to be prepared. Facing the disease is quite painful for the loved ones and can present an opportunity to meet with a Geriatric Psychologist to educate you and help you cope with seeing your Mom fade away.

If you haven't met with an Elder Law Attorney to get end-of-life documents in order, please make that appointment and take advantage of the opportunity to start planning your end-of-life. We all have a lot to
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You dont really know - some people start Falling down and getting incontinent - that's a sign when they have a stroke or can't speak . Nothing can prepare you for this Journey . The Cognitive testing helps and a MRI for a baseline - I would suggest that route .
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It’s such a tough journey. Some days I think my father is probably in his last year of life, and then other days it seems like he is actually improving. I know improvement actually isn’t possible with Alzheimer’s, just good days and bad days, but some days he remembers things that I would never have expected him to. Physically he is doing okay. He is skinny and unstable on his feet, but still cleans up the yard every morning. I love my father but I do not want his journey with this beast to be a long one. I hope for a quick passing before he needs placement. Same thing I would want for myself.
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My wife has been declining as well. She is bed bound with dementia. Her care givers have recommended hospice several times and my response is what if she lives longer. Her family history would predict at least 5 or more years. So we take it one day at a time. Personally I think it is important you get your own support network to help you through the long process
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lealonnie1 Jan 2023
Hospice is not going to 'kill' your wife; they are going to allow her to live her life w/o going back & forth to the hospital to be poked and prodded, that's all. If she's intended to live for 5 years, she'll LIVE for 5 years w/o going to the hospital unless she breaks a bone or something like that. Hospice reevaluates a patient's eligibility every 6 months; Medicare pays for all hospice services, a hospital bed, RN to visit her, CNAs 2x a week to bathe her, meds, lotions/potions/diapers, chucks, pads, etc etc. Learn all you can about the benefits of hospice so you don't think their purpose is to shorten your wife's life, ok? Their purpose is to make the end of her life as painless and happy as possible, w/o unnecessary medical intervention.
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I know you want to prepare yourself and know some steps in her decline but sadly people are different. For my mother In Law, she was in Alzheimer’s unconscious for 5 years. She was a healthy strong lady physically so the body kept going.
you need professionals to give you some answers.
For me personally the signs I saw for my mother and a cousin as there falling several times a week and passed weeks later.
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Karen51 Jan 2023
Thank you. My mother has been Az unconscious for two years now. Same as your Mum, strong and healthy body.
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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…..it’s tough.
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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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Hi. When reading that you " just got back from visiting" your mother and, the concerns that you share, my first question is where is your mother living? At her home, alone, with other family, in a facility, retirement community, ALF, etc etc ???

If you are observing decline ( and it doesn't say how long between your visits ) , safety for your mother is the first concern and, quality of life. Be sure that the decline observed is being addressed by her PCP.

As for "how long ", and " what to expect" these should be addressed with her PCP, and a full professional assessment of her level of care needs be addressed. Where and how she is living and, what support she is receiving can dramatically affect her quality of life and length of life.
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I look for this answer all the time. My Dad was diagnosed in October 2021. My mum died in the November and pretty instantly he forgot her. He thought I was his wife and the decline had been so very severe. In 14 months he has gone from a organised competent and social man to somebody who no longer knows family or even what words mean. He knows I love him and he knows he loves me but this is very fleeting. He Jo longer uses “words” and makes up own little language and absolutely doesn’t make any sense. It breaks my heart to see him now but I love him for the different person he is, softer and very emotional. I look for answers and like you maybe even hope that the end is near for him as this is a hideous way to survive. He does have lots of medical issues but to be fair as he’s lost weight he is In the best shape of his life, physically. I wish there was answers I really do, sometimes I think it must be coming to the end, but like others have said this can go on for years. I’m so so very sorry x
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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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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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Hello. I totally understand your plight, concern, sadness. Unfortunately, there is no cure. I had to watch my mom exactly like yours fade away. No light in her eyes, to does not know her own name. Totally dependent not independent anymore.

You can only be her comfort, her son. If you have other brothers and sisters, everyone will have to get seriously more involved with their mom.

I did not want to place my mom in a facility. She lives with me but my wife and I are her care provider.

Its going to be a life changing ordeal for you but you'll learn about dementia, you'll be able to help others because one day, there will be someone in your shoes.
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There is no absolute answer but my father started a decline like this last July, also triggered by a UTI. He passed away December 28.
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My LO had large pressure sores all over her, but was peaceful and content.

She was in hospice care for a year and a half, before her in medicated passing.

I watched with every daily visit for any small signs of distress, and none appeared.

The last time she said “I love you” was a little more than a week before she died.

I was truly blessed.
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AnnReid Jan 2023
“UNMEDICATED PASSING”
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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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lorrising Jan 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.
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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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DaughterfromCA Dec 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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