Follow
Share

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?

This question has been closed for answers. Ask a New Question.
Find Care & Housing
If she’s living alone, it’s time to find a place where she’ll be safe. You never know how much time is left, but from what you describe, the decline is swift and it’s unlikely to stay the same or stop. The confusion should be very concerning, because with that, she’s not going to be living in the real world for long. Be prepared and do what you need to do now. Don’t wait to see what happens because it already is. Very sorry she’s in that situation.
Helpful Answer (4)
Report
DaughterfromCA Dec 2022
Thanks, she is already in a great care home. Fortunately got her situated before the dementia became apparent, so she’s had time to acclimate. Has even thanked me for finding the place- clearly preferred pro care to me being caregiver (many lucky aspects to our situation!). Not fortunate that disability required 24/7 care pre-dementia. She is getting attentive and responsive care, and is made as comfortable as possible. But all very tough anyway, and yes, just trying to prepare myself for what comes next, what it could look like.
(4)
Report
[oops, posted in wrong place]
Helpful Answer (0)
Report
Agentsmith Dec 2022
Bad girl! }
(0)
Report
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 
https://www.smashwords.com/books/view/210580

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:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Wishing you the best of luck with a difficult situation.
Helpful Answer (13)
Report
DaughterfromCA Dec 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.
(5)
Report
I am so sorry that you are going through this difficult time. It’s very hard to see our parents declining.

My mother developed dementia later in her life alongside her Parkinson’s disease. She had difficulty sleeping through the night like your mom. She also had vivid dreams and would talk in her sleep.

Your profile says that your mom is in her 90’s. I would say the same as Fawnby, be prepared. I am glad that you found a nice care home for her.

No one ever knows exactly how much time is left. Since you feel there is a difference in her, the light in her eyes diminishing and so on, you may want to check into what hospice organizations are in your area to receive comfort care.

Many of us have been very satisfied with care from hospice. The hospice nurses are very good at seeing the signs when they are in the dying process and will keep you informed.

Hospice also provides a social worker and clergy. I found comfort from the entire hospice staff.
Helpful Answer (3)
Report
DaughterfromCA Dec 2022
Thanks- agree this is generally good advice. In our case, Mom actually spent a year under hospice care already (discharged for being too stable) and my FIL was a palliative care doc. While I know my FIL provided excellent care, as did his team- they took absolutely amazing care of him when it was his time- mom’s team was pretty awful- the team manager even sincerely apologized for the terrible state of current care.

Anyway, we have found a terrific visiting geriatrics unit, who I know will refer us back when it is time. Just I know not to go back to the one particular hospice provider. For anyone else reading this in similar sit- vet the hospice provider options! Talk to RNs beyond the admissions nurse! Choose a non-profit org!
(3)
Report
See 1 more reply
The one thing that I learned to realize is that you can never predict the decline. I was asking the same question. In my case, I moved mom into an ALF in May and it was hard to determine if her decline was transition related or the disease. She did begin to enjoy the surroundings. However, she was stable one week and died four weeks later. I will say that I called hospice in much later than I should have. When she began to fail, it was a sharp and a quick decline.

There are so many variables. It is simply impossible to predict. I would encourage you to continue to monitor items that can cause more confusion. I was constantly monitoring UTI’s, potassium, thyroid etc. Items like this can cause confusion that, in some cases, can be improved, as you have seen.

Keep us posted on your journey.
Helpful Answer (6)
Report
DaughterfromCA Dec 2022
I’m so sorry for your loss. Thinking about the possibility of a sudden sharp decline at the end brings a sharp stab of pain to my heart. I imagine it can be it’s own type of trauma/ loss. Thank you for sharing your experience.
(5)
Report
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?
Helpful Answer (11)
Report
DaughterfromCA Dec 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.
(11)
Report
See 1 more reply
My mom was being treated for stroke prevention and was also never formally diagnosed with any form of dementia, but once I did some research I realized that's what having her MRI "light up like a Christmas tree" undoubtedly meant. My mom lived around 10 more years after her initial dramatic decline and I spent a lot of time looking for answers. These are two sites where I found found relevant info:

https://www.heartandstroke.ca/stroke/what-is-stroke/vascular-cognitive-impairment

https://www.bcm.edu/healthcare/specialties/neurology/parkinsons-disease-and-movement-disorders/vascular-parkinsonism
Helpful Answer (7)
Report
DaughterfromCA Dec 2022
I will read those links and try to understand what having an MRI light up like an x-mas tree means.

In the meantime, yes, I was stunned that after two hospitalizations and multiple scans, no one ever spoke to us about dementia, but that an MD friend could parse the verbiage and based on my description of behaviors, let me know we were probably looking at delirium + vascular dementia. Have plenty of respect for the medical profession, but…

Thanks again for links. Feels like I’ve hit something of a wall googling on my own.
(6)
Report
See 4 more replies
[posted in the wrong place AGAIN]
Helpful Answer (2)
Report
Agentsmith Dec 2022
Thats okay, its no crime. }
(3)
Report
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.)
Helpful Answer (20)
Report
DaughterfromCA Dec 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.
(13)
Report
[I swear I hit “Reply to Grandma1954”!]
Helpful Answer (0)
Report

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.
Helpful Answer (23)
Report
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.
(10)
Report
See 1 more reply
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.
Helpful Answer (9)
Report
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.
(4)
Report
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.
Helpful Answer (6)
Report
AnnReid Jan 2023
“UNMEDICATED PASSING”
(2)
Report
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.
Helpful Answer (1)
Report

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.
Helpful Answer (3)
Report

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.
Helpful Answer (9)
Report

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.
Helpful Answer (9)
Report

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
Helpful Answer (3)
Report

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.
Helpful Answer (3)
Report

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?
Helpful Answer (12)
Report

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.
Helpful Answer (13)
Report

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.
Helpful Answer (4)
Report
Karen51 Jan 2023
Thank you. My mother has been Az unconscious for two years now. Same as your Mum, strong and healthy body.
(0)
Report
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
Helpful Answer (5)
Report
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.
(8)
Report
See 1 more reply
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.
Helpful Answer (5)
Report

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 .
Helpful Answer (1)
Report

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
Helpful Answer (0)
Report

hard to say one day at a time before full time nursing home care needed, be pepared to take care if she becomes inconcinent.
Helpful Answer (0)
Report

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.
Helpful Answer (0)
Report

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.
Helpful Answer (6)
Report

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.
Helpful Answer (7)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter