Alzheimer's, Dementia, and the soul

[Neto]

As many here know, Alzheimer's took my father Sunday the 13th. The funeral service was last Saturday, and in spite of the sadness involved, it was a good time with my family, and while it is sad that my dad is gone now, I know I will see him again, and knowing that his memory has been restored to him now, that part is happy.

I've been thinking about this, because in this case, and in others where memory loss is serious like this, I've sometimes wondered if the person's soul is really still there - captive as it were, in the human body, or pushed down into the depths of one's person. But I've realized that as I've heard my mom telling about the things my dad would tell the health workers, that in some ways it is the opposite. The soul rises to the top, so to speak, because all of the inhibitions we 'normal people' struggle with every day are either gone - annihilated, or severely suppressed by the disease. He often asked the nurses who came in to care for him: "Do you know Jesus?" Indeed, the one part of his memory that was not deeply affected by the severity of the disease was his faith, the Scripture, and the desire to see everyone come to faith in Jesus. And even as he wondered why it hadn't happened yet, he was always encouraging mom that Jesus is coming back for us.
The last time we visited there before they moved to the retirement home was 2 1/2 years ago, and I remember how, even though he already didn't know me anymore, how deeply he knew Jesus, and that as he still took his customarily place of praying at every meal we shared, all of them made sense, but what most amazed me was that each was different. There were no phrases or expressions that were repeated, or common to every prayer. It was as if what he prayed was untouched by the mind-numbing effects of our conscious thoughts, like it was his soul that was praying, and not his mind at all.

[Grace]

As many here know, Alzheimer's took my father Sunday the 13th. The funeral service was last Saturday, and in spite of the sadness involved, it was a good time with my family, and while it is sad that my dad is gone now, I know I will see him again, and knowing that his memory has been restored to him now, that part is happy.

I've been thinking about this, because in this case, and in others where memory loss is serious like this, I've sometimes wondered if the person's soul is really still there - captive as it were, in the human body, or pushed down into the depths of one's person. But I've realized that as I've heard my mom telling about the things my dad would tell the health workers, that in some ways it is the opposite. The soul rises to the top, so to speak, because all of the inhibitions we 'normal people' struggle with every day are either gone - annihilated, or severely suppressed by the disease. He often asked the nurses who came in to care for him: "Do you know Jesus?" Indeed, the one part of his memory that was not deeply affected by the severity of the disease was his faith, the Scripture, and the desire to see everyone come to faith in Jesus. And even as he wondered why it hadn't happened yet, he was always encouraging mom that Jesus is coming back for us.
The last time we visited there before they moved to the retirement home was 2 1/2 years ago, and I remember how, even though he already didn't know me anymore, how deeply he knew Jesus, and that as he still took his customarily place of praying at every meal we shared, all of them made sense, but what most amazed me was that each was different. There were no phrases or expressions that were repeated, or common to every prayer. It was as if what he prayed was untouched by the mind-numbing effects of our conscious thoughts, like it was his soul that was praying, and not his mind at all.

I am sorry for your loss Neto. I had one of my in law parents die of Alzheimer's. They were in an Alzheimer's unit in a nursing home for several years and we made many visits into that unit. In those years I observed many of the other patients, as they would often be out in a large living room area. There was one conservative Mennonite lady who was very distressed and kept pulling her head covering off, by her spastic hand movements. I would put it back on and tell her it is important she leaves her covering on, to which seemed horrified that it came off in public. Kind of like a woman who wears one, and forgets to put it on because she was in a hurry, only to realize it is missing when she is in the middle of a grocery store. Although her mind wasn't there, she still knew that the covering belonged on her head. In her distress, another time I went over to her and began to sing "What a Friend We Have in Jesus" rather loudly. To that she calmed down and and sang the song beautifully, knowing all the words. Yet it was impossible to have a logical conversation with her.

I agree that Alzheimer's debilitates the inhibitions people had. In your father's case it revealed a good thing. But in some cases the carnal man comes to the surface. I saw that as well, when a well respected Christian person acquired Alzheimer's, they became mean, nasty, and angry. Women often revert back to their early years as mothers, which is why many of the ladies held their babies, (dolls) talked to them and cuddled them.

Was it the soul of your father that was praying or were those prayers ingrained in his brain from his earlier years? I guess we will never know. But be assured, he is alive and is with his Lord and Savior.

[cmbl]

A year or two ago, I attended the funeral of an elderly woman from my parents' church who died of dementia. At one point, though she was confused about many things, there was one thing she was clear about. She told her caregivers, "I just want to please the Lord."

[steve-in-kville]

I lost my last remaining grandparent in June to Alzheimer's and eventually the Corona. She was a very Godly woman all her life.

In my opinion, and my opinion only, I think people that suffer like this are not responsible for their actions and therefore I feel the Lord would view them as innocent. I realize that could be debated all different directions, but when grandma doesn't remember her only few grandchildren anymore and/or calls her daughter at midnight wondering when she is picking her up to go grocery shopping, I'd say they're pretty much innocent at that point.

Just my opinion.

[temporal1]

Neto:
.. It was as if what he prayed was untouched by the mind-numbing effects of our conscious thoughts, like it was his soul that was praying, and not his mind at all.

.. i believe .. God allows us glimpses of His Truth, if only we are able to accept in awe what is beyond human reasoning.

i was thankful throughout my husband’s illness with Alz that we were not new to our faith.
i have witnessed the gut-wrenching agony some experience when met with inexplicable tragedy with nowhere to turn. it’s a horror.

we met each day with faith and peace; in spirit, he was our leader, even in these trying years.
we lived in gratitude, as strange as it seems to say it. even in his last year when he was bedridden with aphasia. he communicated through his eyes, and some limited body language.
he was “in there!”

he was at home with me. thankfully, in the last 9 months we had Hospice help twice weekly.

beyond human reasoning. the clutter passes. the soul remains until called.

Make Me a Channel of Your Peace

[QuietlyListening]

My dad had Alzheimers and Mom had to put him in a nursing home for the last year+ of his life. Just couldn't care for him at home. While he didn't know any of us and spoke very little he was a favorite of the nurses and aides as he was never combative and always have a smile and thank you.

But I do know we can't 'judge' those who are not as kind or speak words of truth but are believers. It's an ugly disease and affects many differently. Some become combative, accusatory and paranoid and if they knew they were doing these things would be mortified. It affects everyone differently.

We can just pray that deep in their spirit they can know the Lord holding them close.

I'm sorry for your loss. A disease in which you really cannot say goodbye or for many it is that way.

[steve-in-kville]

IIRC, in my grandma's case, she would only talk to my mom and hated my uncle. They were trying to get POA and grandma accused him of trying to steal her money. It was sad.

[temporal1]

Grace:
.. they became mean, nasty, and angry.” ..

My personal experience in caring for loved ones with terminal illness is limited, but intense.
i’m not sure why each one in my care has been “the best” as far as attitude, appreciation of caregivers, humility, faith, trust. i’m dumbfounded by these experiences.

i realize some have very difficult situations that include “mean, nasty, and angry.” i’m not sure how i would manage with it. i hope i never have to face it, i pray to never be that person!

as i witnessed my husband experiencing losses, one after another, over years, usually small losses, one by one, i saw him recognize the loss, his attempt to “will it away,” then resignation; i thought, why wouldn’t he be angry? why not confused? why not panicked?! imagine being contained in your own body, but nothing’s working right, and nothing’s getting better?

i’m not sure if this is accurate. but i find “bad behavior” in sick people understandable.
it must be frightening and frustrating. even with Alz, which isn’t a physically painful illness.
the amazing thing is that any are able to cope, at all. but to cope secure in faith is something of a miracle. for the person and all around.

i was new to Alz, did not know a thing. big learning curve. i read everything i could find - mostly to try to find a way out of it. i did not find that. we took it one day at a time. not knowing beyond that.

my husband was diagnosed* at age 53. young and vibrant. working and robust. it did not seem possible. we learned there is a rare form that afflicts younger people. sometimes in their 20’s.

he was a strong man. if he had lashed out or been violent, i would not have been able to care for him. he could have killed me with one blow. i think he was big, even as a child, it must have been ingrained on him to not be violent from young, he was always careful about that. in illness, there were a few times of momentary lashing out. but, one quiet word, like, “i’m a girl!” would instantly cause him to “find himself” and settle down.

what an experience.

*”diagnosed” is not accurate. specialists told us they cannot diagnose until post-mortem.
they conduct several tests, the results indicate Alz. in my husband’s case, there was no grey area.

[temporal1]

IIRC, in my grandma's case, she would only talk to my mom and hated my uncle. They were trying to get POA and grandma accused him of trying to steal her money. It was sad.

My husband had a cousin who could not visit his parents because his father would become agitated in his presence. He would hit his wife with his cane. The cousin would pick up his mother and take her out for lunch.

In generations past, even 1 generation back, i believe the chaos caused by Alz was (too awful to imagine). Only very recently have people been ok to discuss it, it was so feared, and strictly taboo.

Progress is underway. But the leading specialists we spoke with told us science is just beginning.

[Neto]

I do recognize that some Alzheimer's patients become "difficult", and uncharacteristically so, compared to their previous demeanor. My dad's sister is one of these. (She is currently also suffering with this disease.) And there were times when my dad would get up in the middle of the night, and would start getting ready to go to work. Mom had to hide the car keys. (This was already during the earlier stages, when he still did all of the driving, but with her to help him find his way around.) He would physically resist her efforts to get him to go back to bed, and get upset when she wouldn't give him the car keys. When it was decided that they could no longer stay in their home (my mom made this decision), he was determined not to move elsewhere. Later he was just confused, thinking that he needed to layout and build their next house. (He was a perfectionist, having laid out that house perfectly aligned, with a compass, so it was exactly lined up north-south.)
I suspect that the variations from one person to another may simply have to do with what part of the brain is affected, and in what order. So some will loose social inhibitions (like not knowing that one needs to wear clothing), and others will loose the fear of offending people with spiritual talk, as did my dad. Others may loose inhibitions relating to language use or physical restraint.
I certainly did not intend to offend those whose loved one responded to the debilitating effects of Alzheimer's in less socially acceptable ways.

I started to post this, but was alerted to the fact that another had posted recently. So in regards to Temp's last comments, I agree that Alzheimer's is very little understood. It comes back to the fact that the human brain is very little understood. (A personal example: Some years ago I needed surgery, and when I came out of anesthesia I could not speak English. I could understand it, but could only speak Banawa. Somehow the 'English' part of my brain was still asleep, while the Banawa part woke up first.)