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[I swear I hit “Reply to Grandma1954”!]
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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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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.
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[posted in the wrong place AGAIN]
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Agentsmith Dec 2022
Thats okay, its no crime. }
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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
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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.
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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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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.
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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.
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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.
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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.
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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!
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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.
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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.
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[oops, posted in wrong place]
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Agentsmith Dec 2022
Bad girl! }
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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.
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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.
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