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 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.
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.
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.
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.
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!
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.