Dementia Journal, June 26, 2018 in Daydreaming on the Porch

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.”

Last updated June 27, 2018