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 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.
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
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) ???
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
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.
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.
I miss the mother I had, but once in a while I see flashes of the mother I knew. Best wishes on your journey.
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.
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.
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 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.
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?
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.
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.
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.
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.
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.