J and the Alzheimer’s spider

Today I took Jeanette to lunch.  She sounded really down when I called her this morning.  Last Wednesday was the anniversary of her husband’s death. This Wednesday would be their 37th wedding anniversary if he were still alive.  So, understandably, this is a hard time of year for her.  But even so, when I pulled up in front of her apartment complex she was waiting outside in a nice shirt, shorts and sunglasses with a smile.  She climbed into my front seat and gave me a kiss on the cheek.  All said, I think I got three kisses on the cheek today, and whenever an older woman kisses me on the cheek, I think of me kissing my little boy and I feel so loved.

She told me again how she cared for her mother as she was consumed by Alzheimer’s and ultimately died from it.  “It’s like a spider,” she said.  “That’s what they told me at the Alzheimer’s Association when I was taking care of mom.  And the spider goes around and around until it stops and that’s when you can’t remember.” 

She was describing how the symptoms tend to come and go.  I’ve definitely observed this.  There are good days and bad days.  The evenings are always worse.  Or if she gets overly tired.  In the past six months, when I’ve invited her over for dinner, more often than not, she has turned me down, “I’m just too tired tonight,” or “My mind’s not working right.”  For this reason, I’ve started taking her out to breakfast or lunch.  She’s more likely to remember the encounter, which doesn’t make much difference to me but I think it does to her.

Jeanette was diagnosed with Alzheimer’s a couple of years ago. She’s told me that she was “diagnosed mentally retarded” as a kid and she blames some of her difficulties on her “mental disability.” (I’m using quotes because this is how she refers to these things.) I’ve only known her for the past three years and I’ve started to recognize the work of the spider.  She used to just forget names, then one day she called me after she had been lost walking around our neighborhood for 3 hours in the heat of the day.  She was terrified and horrified since she had grown up in this neighborhood.  She bought herself a necklace with a medic-alert pendant showing her address and stating Alzheimer’s.  She used to venture out farther into the neighborhood on her walks but now she sticks to the same stretch of blocks spanning east to west from her apartment.  

Whenever I call her or stop by her place, I’m not sure exactly what I will get.  Some days, it’s an accusation that she hasn’t heard from me in weeks.  Some days she is eager to hear what’s going on in my life.  Often we talk through the same topics that must constantly be on her mind:  her deceased husband, her strained family relationships, the neighbor lady upstairs who doesn’t like her because the landlord lets her pay reduced rent, the sweeping she dose to make up the reduced rent.  

“I’ve decided I’m going to keep very careful track of all the hours I work.  Then I’m going to show it to Ivy and she will see that I am more than paying my rent with the hours I’m working.”  She showed me a spiral notebook filled with notes and ledgers of hours with estimated hourly rates.  I’m still not entirely sure what is going on between those two.  Jeanette maintains that Ivy is jealous because Jeanette pays reduced rent and furthermore, that Ivy chased out two women, older than Jeanette, who used to live in complex for similar reasons. “She just wants to be the oldest one here!”  It doesn’t completely add up in my mind, but I also don’t know Ivy at all.  I usually recommend that Jeanette ignore her.  But Jeanette finds this hard to do as she has little else to focus on and Ivy lives directly above her.  I’ve learned not to get too wrapped up in the particulars of her worries as what is here today might easily vanish tomorrow or morph into something entirely different.

I was first introduced to Jeanette at her baptism.  I was assigned to be her visiting teacher, which is a system the Mormon church uses to watch over individuals in the congregation.  She immediately insisted I call her J, which is the nickname her deceased husband, Ron, used to call her.  She was very enthusiastic about the missionaries and the gospel in the beginning but she struggled with feeling like she fit in at church.  She didn’t have any dresses so I took her to a thrift store and we picked out some skirts.  I think she used to be able to sew because she attempted to alter the skirts but then reported that she had ruined them.  I didn’t know about the Alzheimer’s back then, but I suspect it might have been to blame.  

One year after her baptism, I went to the temple with her as she was endowed and sealed to Ron.  I helped her pick out some white temple clothing for the occasion.  She was very worried about the cost so we chose an inexpensive skirt on Amazon and blouse from JC Penny.  She looked beautiful for the day.  I’m not sure that she ever made it back to the temple.  She took (and still takes) a lot of comfort from that ordinance, that she is sealed to her husband for time and eternity, but she had little desire to return to the temple.  

We attended church together for most of the next year and she came over for dinner once or twice a week.  J read the Book of Mormon, four chapters a day every day.  We sat together in sacrament meeting and took turns crying for our various losses and comforting each other.  Then, somewhat suddenly, J decided she didn’t want to go to church anymore.  She had already overcome damn Dotty, who told her that coming to church in pants was unacceptable and didn’t she have a dress?  I talked to Dotty about that, a polite but clear, shut the hell up

We were out for a walk in the neighborhood when she told me, “I just think I’m better off going back to my old church; it’s more familiar.”  She said she believed that God would let her be with Ron in the afterlife whether she went to the Mormon church or her old church.  I didn’t disagree.  So she began to attend the church that was within walking distance to her house but we still saw each other one or two times a week. 

That’s about the time that I saw the paranoia start showing up.  I say paranoia in the mildest sense of the word.  They were just strange stories, mostly about people I didn’t know, assigning strange motives and reporting things that didn’t make sense.  She became distrustful of strangers.  She believed her internist was angry with her.  Her son, her brother, her sister.  Everyone, even me, angry with her.  I began to tell her, “J, if you ever think I’m angry with you, just know that’s not right.  I’m never angry with you.”  I said that to her in almost every conversation for about eight months.

One day she reported that the minister of her church spoke about sex in the congregational meeting, “In front of the children! It was completely inappropriate! I’m not going back there.” She wanted to come to church with me so we went.  But ultimately she couldn’t stick with church.  There were too many names and faces and the lessons were unfamiliar.  She left feeling mentally exhausted.  “I’ll just listen to family radio.  I’ve been listening to that program since I was 18.  It makes more sense to me.”  It seemed reasonable to me, though I worried about her increasing isolation.

I’m not sure what inspired her, but one day she told me about how she had dropped the bottle of her thyroid medication on the couch and that a bunch of the pills fell down between the cushions and into the hide-a-bed compartment.  She hadn’t been taking the thyroid medication for months.  “I tried to get another bottle but it’s very expensive.”  I knew this couldn’t be true but I got her a prescription that I paid cash for to supplement her until she could get the next 90-day supply.  

I assumed she was taking the pills but things didn’t seem to improve much.  And after her doctor’s appointment a few months later she admitted that she didn’t think she needed the medicine.  She explained how when her thyroid was partially removed years ago, the surgeon told her that she may not need the medication forever.  That damn spider!  It strung a web from that memory to the present and made if feel absolutely true.  Thankfully her doctor saw the evidence that she had stopped taking the thyroid medication when he checked her labs.  He admonished her to continue the medication and J started to come back.  That edgy distrust fell away and the childlike friendliness I was used to returned.

Her memory did not.  I saw evidence of the spider today as we visited.  “My sister called and she told me that the government has information that they are hiding from the public relating Alzheimer’s to the bombs they used in World War II.”  I recognized this story immediately.  J has been telling me for years that because both of her parents had Alzheimer’s and that she does too, it must be related to the bombs in the war.  Her mom worked in a factory making the bombs when she was expecting J.  And her father was a soldier.  Maybe there’s some sense in that correlation.  I don’t know. But then she went on it tie it into how the government didn’t support the Vietnam veterans, and how that ruined her first marriage.  And then looped into her opinion that no one is working on curing Alzheimer’s because if they were then they would have found something by now and they are only interested in selling pills.  This is how the spider works—little elements of truth tied together in a confusing, sticky web.    

J is still devastated every day that she is left here in San Diego alone.  Her mom, dad, grandparents and husband are deceased.  Her relationships with her brother and sister, at least from J’s perspective, are strained.  Could be the spider but, at any rate, they don’t live here.  Her son has really stepped up his level of support but he is far away.  Her daughter has no contact with her, which still I don’t remotely understand.  Last week she told me that before she dies in six years she wants to meet her grandsons and see her daughter.  I didn’t know what to say, except that it sounded like a reasonable request.

Today, as we were finishing our lunch she told me, “You know, I think God wanted me to be left alone here so I would learn to rely on him.  And I think because I took care of my mother with Alzheimer’s, that I’m more prepared to take care of myself.  I think God wants me to keep learning.  And I know one day I’ll be with Ron again and we will serve the Lord together and I’ll be so happy for you to meet him.  He’s going to love you!”  This is what I most admire about J, even with the spider, she is still learning, she’s still open.

2 thoughts on “J and the Alzheimer’s spider

Shine some light my way. Tell me your thoughts!