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Dementia Journal, Nov. 27, 2019

How can I even describe what things are like now?  I struggle to find the words that even begin to approximate the surreal world of advanced dementia.  Not only is Mom increasingly anxious, fearful and angry , but she’s this way more and more of the time now.  I’ve seen a change over the past month.  She can hardly read her Bible verses anymore, she lashes out at me and the other caregivers whom she thinks are trying to kill her.  At night she starts accusing me of this and then she’ll say something like “you’re killing me.  I’m going to kill you as soon as I can get a gun.”  This never fails to be an appalling sign of something in her mind gone horribly wrong.  This sweet, refined, sophisticated lady who smiles at me in the morning as she’s waking up, has no  recollection at all of the previous night’s  anger and aspersions.  I try to put it aside, too, even if it’s only been a few hours.

The caregivers and I are all wondering why Mom has these violent thoughts.  It’s not that it’s a rare anomaly but she talks about being killed or killing others frequently.  Even with her suffering from advanced dementia it’s baffling.  Was there some traumatic experiences that befell her long ago that she had suppressed but can no longer do this because certain regions of the brain are destroyed or no longer functioning?  Is it that there are no longer filters on her emotions and that she says anything she feels like saying because those filters are now gone?  Is the primitive brain stem taking over?

Mom seems definitely to have regressed to a second childhood.  Her most frequent words now are “Mama, Daddy, come quick, I’m dying.” Or she’ll just call out, “Mama, Daddy where are you?”  She doesn’t ask for me, my father who died 27 years ago.  Today he would have been 98.  Mom turns 96 soon.

What else is happening that tells me the end might not be too far off?  She sleeps most of the day and all night, sometimes 24 hours a day.  Her pressure sores are stubbornly refusing to heal despite all my efforts.  Her incontinence is much worse.  It now takes me as much as 45 minutes to get her cleaned and in bed.  I’m having to do more of this with her in the bed rather then on the portable commode by her bed.  She’s started to get blood sugar lows again.  Her reading was 58 last night when I took it, 100 points lower than it should be at night.  And, she is fully regressing back to childhood.  And she repeats things over and over until you think it’s going to drive you mad.  Over and over and over.  I’ve increased the Ativan dose, but that’s not helping too much.  I have the backup antipsychotic drug Haldol which I may soon have to use.  When she’s in those Sundowning moods and states of mind, I start getting upset, jittery and a bit manic.  I repeat things over and over to her trying to get her to calm down.  I start to get careless and this is when I knock over glasses, stumble on furniture and start to lose my patience.  When I get upset at her she just immediately picks up on this and resists my efforts to dress those pressure sores on her upper buttocks and get her cleaned up and in bed.  The other night she went into dead weight mode, and I had a terrible time getting her to bed.  More often than not with incontinence I have to continue cleaning and wiping her and then have to clean once again with a special wound cleanser and apply  medical grade honey and foam bandages to those pressure sores.  Sometimes when I’m doing this she’s utterly quiet and docile.   The next minute she’s grabbing at me with her fingernails.

I was talking to one off the caregivers who works the afternoon shift three days a week and she told me she didn’t think she or her sister could not take care of their mother if she got like Mom.  I replied that this is mostly the norm with advanced Alzheimer’s and other dementias but that when you relinquish care of a loved one you lose control and have to worry what happens after you’ve left the nursing home or memory care facility and your loved one is alone there.  It’s incredibly difficult and stressful for me to care for Mom.  Can you imagine what it’s like for poorly paid aides in nursing homes to tend to nine or more residents a night?  Can you imagine the turnover?  I hear about these things from the other caregivers who have worked on nursing homes.   I know I wouldn’t ever want to be on one but I don’t have children, one of whom might tend to me if I had dementia.

Our caregiver then mused on how I managed to do it day after day and night after night.  I replied that certain life events such as dealing with clinical depression for a solid year and being unemployed for long periods have steeled me to life’s seemingly unbearable hardships.   I’ve been through a lot worse than being a caregiver, even though I know what I’m doing now is only going to get harder and more emotionally draining,  And then there are the moments of unflinching love which Mom expresses to me first thing in the morning,  moments which are some of  best of the day.  When she wakes and sees me she may not know my name or recognize me as her son anymore, but she “knows” me as the person who helps her get ready for breakfast every morning.  it’s actually afternoon because I still get her up too late.  I’ll invariably joke with Mom that it’s after 11 am ands then ask her if she plans to stay in bed all day.  “No, of course not, she’ll say.”  I rub her hands, scratch her back ( (probably the thing she enjoys most).  I tell her I have her coffee ready and she that she’ll be getting a good breakfast.  The power of routines cannot be over-estimated.  I see her beautiful smile as she says to this person — me — “I love you.”

At night now what a change has come over Mom.  “You’re a nasty man and I hate you,” she’s saying over and over.  “Mama, you better come quick.  I’m dying and I’m  peeing in my pants. I hate you. I hate you and I’m going to get back at you in a little while.”

Yes, I’m exhausted going through this night after night.  I re-iterate what I wrote earlier:  I wonder how it is humanly possible to properly and humanely  care for the elderly and demented in a nursing facility when each aide, even if working in teams of two, might have to clean and attend to as many as nine or more individuals in a single shift.  I can barely handle one person.  Can you imagine how I’d worry about Mom’s care in a facility with her lying there unattended?  I try to imagine scenarios where Mom is in a decent care faculty and I find time to be briefly worry-free at home.  There aren’t that many options, so I doggedly keep on keeping on.

10 pm

It’s been a good day, but night always has to intrude.  That’s when her bouts with Sundowning syndrome are so bad.  She won’t stop talking and crying out to her Mama and Daddy.  I wonder what they would tell me or her if they heard her from another realm like Heaven.  I was telling my sister the other day that her quality of life is significantly less from even a month ago.  She’s at a stage now where the anxiety and suffering are becoming more acute.  I’ll give her some Ativan and and try to get her to bed in  another hour or so.  Much more than before I’m asking myself why she has to suffer like this day after day and month after month.  An incredible change from a year ago.

I’m trying to lie down in the  living room for a few minutes and finish this.  It’s very difficult.  I’m still not ready to give her the antipsychotic drug Haldol.  For one thing, I wouldn’t be able to get her to bed by myself.

So until bedtime it’s full Sundowning time.

Here’s a definition of that term from Wikipedia:

“Sundowning, or sundown syndrome, is a neurologic phenomenon associated with increased confusion and restlessness in patients with delirium or some form of dementia.  Most commonly associated with Alzheimer’s disease, it also is found in those with other forms of dementia.  The term “sundowning” was coined due to the timing of the patient’s confusion. For patients with sundowning syndrome, a multitude of behavioral problems begin to occur in the evening or while the sun is setting.”

About a month ago I jotted down this dialogue that was really more of a monologue:

Mom:  “I’ve got to live a normal life again.”

 She is having Sundown syndrome pretty bad now.  It’s about 7 pm . 

 I’ve been trying to reassure Mom she isn’t dying.  She thinks someone is trying to kill her.  I’ve given her some Ativan. 

 Me: “Mom, no one is trying to  hurt you.  We love you.”

 Mom:  “You know what you are? A damn fool.”

 I try to start reasoning with her, even though  I know she’s being totally irrational.   This is probably a mistake but it makes me feel better.   To me I probably sound like a stern schoolmaster. 

 Me:  “Now, Mom.  You shouldn’t call me names.  It’s not nice.”  I look at her.  “Who is taking care of you? You shouldn’t say things like that to someone who’s taking care of you.” 

 Mom, completely out of the blue:  “Happy Valentine’s Day!”

 I never know what she’s going to say. 

 A half hour later:  “I’m dying.  Why doesn’t  somebody here tell me they’re praying for me?  Amen.”

 Mom: “Am I dying or are you killing me? Mama, pray for me.  You can kill me.  I don’t care.  Mama, you better come get me cause you let them kill me.  You killed me last night. I’m going to kill you.”

 An hour after the Ativan, she’s still talking nonstop.  I’m waiting to see if the dose I gave her kicks in soon, otherwise I’ll have to double it tomorrow.

 The Ativan is starting to work. 

 “Mama, you can come take me.  I love you.

 “Where am I?

 “Is God with me?

  “I’m dying?  No?

 “God’s with me.  Amen.”.

 “Will my mother be with me  when I pass?”

 She points  to the flowers I put on her TV tray a little while ago.

 “Mama, pray for me.

 “Is God with me?”

 “Yes, I reply.

 Mom:  “Oh, thank you.”

 Me:  “We love you.”

 Mom: “I’m so glad.  Amen.”

 Mom’s starting to doze off now.  Thank goodness.  It’s finally quiet.  Soft music is playing in the background.

 She just woke briefly and said me.  “ I love you.”

It’s Thanksgiving tomorrow.  Despite everything, we have a lot to be thankful for.

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Alan
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Alan

It really hurts to see a loved one through all this. You do your best and sometimes it seems like you can never do enough. There is a Hawaiian tradition called Honi and other cultures have a similar practice of touching forehead to forehead and they call it by different names. We are not Hawaiian but it is something I shared with my mother during our sweeter moments and it helped us connect. Then I’d close my eyes for one or two breath cycles and draw away with a smile. I miss her so.

Lola Craig
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Lola Craig

My heart aches for you as I have had a very similar experience. Blessings to you in this journey. Keep loving her and being present.

Melody Ringo
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Melody Ringo

Your diary entry above sounds so familiar, Oldlamplighter. You are an amazing caregiver. Your story touched my heart. Our family recently took turns caring for my 90-year-old mother-in-law after a massive stroke occurred in early September. Her youngest son (my 56 yr. old brother-in-law who is a registered nurse by training) was her primary caregiver for years before that. She was also a brittle diabetic and had already survived several heart attacks and smaller strokes. My brother-in-law now has advanced liver disease (non alcoholic) and requires regular blood transfusions due to letting his own health take the back seat. We… Read more »

Denise
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Wishing you many more moments of gratitude. I’m grateful you keep us posted.

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