Dementia Journal, June 26, 2018

Mom’s been so sweet lately. All day she sits on the big sofa in the den and dozes for long stretches , wakes up and starts asking questions or reads either  out loud or to herself her favorite Bible readings and devotions. I’m so thankful she can still read but it’s getting more difficult and she doesn’t know or recognize some common words now. She’ll ask me what a particular word means. The days pass in a kind of mellow haze for me since I retired. my mother and the caregiver working that day. She’ll constantly ask me and the caregiver on duty if she’s okay or alright, and we’ll assure she is. She needs that constant reassurance.Her vitals and blood sugar are generally good each morning.

I feel more then ever a tenderness toward her and a sadness that she has to go through the time tribulations of dementia. Tonight I looked at a photo of her taken about 20 years ago with my niece and and she looked so beautiful, young and vital . She was 74 in the picture, but she always looked 15 or 20 years younger than her age.

I think about her as she is now by comparison when she endures episodes of terrible incontinence, struggles to to stand upright for more than 20 or so seconds while I try to clean her, apologizes for being the way she is, yells or curses when we accidentally hurt her when we grip her arm the wrong way trying to get her up. “You’re hurting me,” she’ll say. She’s so fragile now that even gripping her arm can be painful.

I think of how totally different she used to be, so independent and really doing well on her own after Dad died. That was in 1992.

During the day she seems to have a kind of clarity, a sense of calm. She’s not as confused, she’s more relaxed. The caregivers really like it when she’s that way. They’ve seen the other side. The full-blown dementia side.

At night, however, it’s frequently a different matter, particularly this week. The days have passed rather uneventfully. But each night as she he evening wears on, the confusion, agitation and fear increase. Sometimes it comes on very quickly. I think it’s part of what’s known as Sundowners Syndrome. Of course, the last caregiver leaves by 7 pm and I’m on my own until 10 the next morning of 1 or 2 in the afternoon. That’s a long stretch. I’m up all hours of the night to trying to read or write and catch up on the Internet because it’s almost impossible to do this when I’m with her.

I’m getting sort of numb to the confusion and endless repetition of questions because it’s become such a large part of my life.

I also have to keep a sense of humor. She’s always coming out with bizarre statements, which to her are perfectly rational. When you lose your memory, you forget what’s happened to loved ones. Oftentimes she thinks she’s still married and that person she’s married to is me.

Last night about 9 we had this exchange:

Mom: “ Aren’t you glad we’ve had such a good marriage?”

Me: “Mom, I’m your son!”

Mom: “Oh yeah.”

Now when she confuses me with my father, I correct her. When she asks what has happened to her sister and mother and father, I tell her what actually has happened. I really don’t think it’s right to pretend they are still living. I think she has quite enough sentience left to realize what I’m saying is true. There are some experts in the field of dementia who urge family members to remember that a loved one with dementia or Alzheimer’s is not in the same world or planet where you are. An instruction booklet refers to their living on “Planet Alzheimer. One is supposed to pretend and play act as if what they say or communicate through their damaged and distorted mind/brain is real to them so you also must act like it’s real and respond to them accordingly at their level. I tried it once telling her after she inquired where her late sister was that she hadn’t gotten up yet but would call soon. I’m sorry, but this type of playing along feels too fake and dishonest, so I just level with her as I always have for the most part. She seems to understand that and doesn’t get upset. She was and still is in many ways a very intelligent person.

Another short episode from last night:

Mom: “Are you my mother?”

Me: “Mom, come on. Do I look like a lady? I’m your son.”

Mom: “Oh, I know. That just slipped out.” (She really knows so I have no idea why she says those things).

Can you imagine if I tried to pretend I was her mother so she could continue to live apart from reality on “Planet Alzheimer?”

About three weeks ago , she was going nonstop with variations of the following basic monologue with an occasional interjection on my part. I jotted down the exchange in a notebook so I could record it here and let you know what it’s like trying to live in the “real world” with Mom.

Mom: “I’ve known for some time that I’m not quite right, and I pray for God’s help.”

“F___, Am I your brother? Are you my family?

“Where do I live? In this house?

“I need extra prayer.

“Am I in good shape? Physically? How about mentally?

“I’ve decided I’m not normal.

“Do we have the same mother?

“You hope I’m normal.

“How much older am I than you. I definitely think I need to see a doctor.. My mother doesn’t think so but I do.

“My mother and father died a long time ago.

“You know this is a wonderful home we live in.

“Now F___, You’re my brother. (“F” is the first letter of my middle name which I am called by my family and old friends from when I was growing up in New Orleans)

Me: “No, Mom, I’m your son.”

Mom: “Oh, I didn’t realize that.” (She really did.)

“Tell me, F___, what’s wrong?

Me: “nothing’s wrong.”

Mom: “Am I normal?”

Me: “Yes, you’re normal. (Normal as apple pie, I joke. Besides, what’s normal, Mom.”

Mom: “Is this our home?

Me: “Yes.”

Mom: “Tell me what’s wrong with me.”

Me: Nothing’s wrong with you.”

Mom: “Will you pray for me?”

Me: “Yes, of course.”

And on and on it goes for an hour or two, and I absolutely can’t ignore what she’s saying or leave the room for more than a minute.

This is where it really got interesting one night recently because buried questions and issues were bubbling up to the surface. I’m no psychiatrist but….

Mom: “Tell me, F__, do we have a child that’s emotionally disturbed?”

“Did my mother have one who was emotionally disturbed?”

“I think I have one son who’s a little off.”

Me: “Who’s that, Mom. Which son is that?” (I have one brother who lives nearby).

Mom: “You.”

Me: “Me? Well I guess you could say I’m a little off. That might be an understatement.”

Mom: “I thought I was your aunt.”

“F__, are you normal?” (No comment. I was able to let that one pass.)

Mom: “Am I doing alright?”

Me: “You’re doing good.” You’re a sweet Mama.”

Mom: “I love you.”

Me: “I love you, too, Mom.”


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June 26, 2018

You’re very sweet to your mama. 🙂   Still, it must feel like you’re trapped in the movie “Groundhog Day.” How many years did he have to live the same day over and over again so that he had enough time to learn to be proficient on the piano and to be a doctor? It must be enough to drive you mad.

June 26, 2018

@startingover_1  Thank you for the kind words.  I never saw the movie so I can’t follow the analogy, but I must say I am becoming accustomed to this rather strange life where freedom is basically forfeited.  Tonight Mom was on a manic roll of repetitive thoughts and getting more and more anxious.  Fortunately I was able to distract her and she calmed down.  She is my mother and I love her deeply.  That love enables super-human patience that is needed to deal with this.  It’s one day at a time.  When I try to look into the he future as to where all this might end up, it can be rather frightening, but I make myself stop that kind of thinking.  That’s another whole journal entry in and of itself.

June 27, 2018

@oswego wow! You must be the only person on earth who hasn’t seen “Groundhog Day.” It’s about this self-centered, egotistical reporter who gets sent to cover Punxsutawney Phil on Groundhog Day. He gets trapped in a loop of repeating the same day over and over and over again  until he learns a lesson about himself. He is trapped for so long that he learns to play the piano, and also learns how to be a doctor to save someone’s life. It stars Bill Murray and is pretty amusing.

June 27, 2018

@startingover_1   You’ve convinced me!  I will have to see that movie!  🙂

June 26, 2018

Sometimes telling people with dementia the truth can send them into a panic, thats why they suggest that you, not go along, but acknowledge their statements. You’re a blessing to your mother for caring for her through all this, I know its not easy. I take care of society’s throw aways for a living.

June 26, 2018

You must have exquisite patience.  It is very sad to lose your loved one to dementia.

But I had to smile at some of the things she says.

June 28, 2018

@trunorth  Yes, we still can have some laughs.  Her sense  of humor is still intact, thankfully.  I know which jokes and anecdotes from way back to tell her and which almost always elicit a smile.

 

You’re right.  It does take exquisite patience being a caregiver year after year.  Sometimes I feel like pulling my hair out, but that feeling passes.

June 26, 2018

In the sweetly childlike phase of dementia, it is kinder to just mmmhmmm and help them keep their hands busy. A basket of unfolded wash clothes wasna favorite. Validation therapy, well. Two schools of thought. You can recenter in reality, or you can roll with wherever they’re at. I think the appropriate answer lies within the progression of the condition. Early on, recenter. Later….let them wander where they need to go. Wander with them. It is kindness.

June 28, 2018

@e3   You make some wise observations, based on experience, it seems to me.  Mostly re-centering  in reality works very well for Mom.  If I feel it’s to her benefit and  mine as well, I let her thought go where they may and I try to offer supportive responses, but generally sticking with what’s real and actual works.

June 27, 2018

This is heartbreaking. You’re a wonderful son. My husband is 81 and has some memory issues.

June 28, 2018

@ipsofacto  Thank you for your kind and supportive words.  I worry about my memory as I get older, but so far it seems to be the normal aging process.  I try to keep  well informed and eat foods and take supplements that are good for brain health, turmeric, for example, and lots of blueberries and walnuts.

Ren
June 27, 2018

I work in a memory care ward of a well-known retirement community. (I’m not a CNA but a dietary aide) And I find that when I answer honestly and speak to the residents as rational adults instead of fluffing the pillows of their make-believe world as if they are children, I get far more positive responses and reactions. I even hold lengthy conversations with them in which I feel as though I’m connecting with the ‘person that’s in there’ beyond their cloudy consciousness. You’re doing a great job. And no matter the quality of the facility, folks are almost always better in the care of family. I bet she’s happy to be with you.

June 29, 2018

@renwilderrex   Your words really resonate with me and affirm how I feel about relating honestly with my mother as she grapples with dementia over many years.  From her responses I am convinced this is what she wants.

Ren
July 6, 2018

@oswego Good. 🙂 Stay confident in that affirmation. What you’re doing matters.

June 27, 2018

Your mother is soooo lucky to have you! A wonderful son and her very best caregiver. 🌻

June 29, 2018

We always told my mom the truth, which seems much kinder than lying, and she always responded well to it. She would have similar repetitive questions, and once got really upset with my dad when he told her the baby in one of the pictures in the livingroom was her son. She said she couldn’t remember having a son, and asked why he’d never told her about him. Luckily my brother lives very close by and was able to come down and reassure her.

You really should watch Groundhog Day!

June 29, 2018

LOL, I actually am contradicting myself in that note when she didn’t respond well to being told who the baby was! But I think there is still enough of a connection there somewhere that making things up would be a lot worse. She was upset that she didn’t remember him, which makes sense- I think she was aware that she was losing hunks of memory, and that would upset anyone.

July 2, 2018

@ednamillion  They definitely are aware but my mother has lost her memory so slowly and over so many years that she lives in the present and doesn’t remember the person she was.  I am so used to this different mother that it is difficult to picture and remember her as she was.  It’s very strange the way new realities become the norm.

Mom has at times been very upset with me for insisting I was her son.  I certainly couldn’t play act that I wasn’t.  Also she’s been angry because, as she insisted, no one told her that her sister died many years ago.