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 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.
Thank you also for the book rec and hope you don’t mind, I may stalk your post history.
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.
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!
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.
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.
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
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.
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.)
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.
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.
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.
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.
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.
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.
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.
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?
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.
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
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.
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.
I miss the mother I had, but once in a while I see flashes of the mother I knew. Best wishes on your journey.