Journey Through Dementia

Journey Through Dementia

Thursday, January 28, 2016

Email from Jeri

"I talked to Grandma the other night.  It was the first time I was alarmed by her confusion.  She talked to me super-brightly, bland making-conversation... "where do you live these days?  Are you happy?  Do you have a boyfriend?"  There's usually a moment of confusion and then a moment when it clicks into place who I am and what my general bio is... this time it just took a lot longer to get to that point."

Wednesday, January 27, 2016

Return to Hannah

This was another day I had looked forward to which didn't quite work out the way I expected.  My mother's hair has been looking just horrible and she is overdue for a permanent.  The woman who does hair at Atria just doesn't do her hair right.  The last two times she had a permanent, she came out looking like a q-tip.  I decided to call her old hairdresser in San Rafael.  She went to Hannah every week for some 30 years until she moved to Davis.  In fact, the very last thing she did on her last day at her old home was to have Hannah do her hair (my ploy to get her out of the house while the rest of the family cleaned it out without her interference.)

Before I made the appointment, I asked my mother if she'd like to go and she said that yes, it would be fun to see Hannah again. After I made the appointment, I told my mother that she had an appointment and she was pleased and said again how much fun it would be to see Hannah again. I wrote it on her calendar and reminded her it was there.  I told her two days ago, when I left, that I would be back on Wednesday to take her to Hannah. 

I decided to go early and bring along a small lunch, since she wouldn't have time for lunch in the dining room and there is a beautiful lagoon near Hannah's house and I thought we could eat there.  Knowing she doesn't eat much, I made a small cottage cheese and peach salad and bought a pastry and packed all in my new insulated bag, replacing the one I left behind on the bus bench last week.

When I got to her apartment, she wasn't there.  I went looking for her and found her in a corner near the dining room with a cup of coffee and 2 cookies.  Breakfast.  I said I had come to take her to see Hannah and get a permanent.  She grabbed her hair and wailed "do I have to???"  I'm afraid I wasn't very nice about it. She can't help it but I don't know how else to help her.  I could have called her from the Atria parking lot to remind her and by the time I got to the apartment she would have forgotten.

We argued, she withdrew. Said she thought she was all set for today because she knew what she had to do and now I'm telling her she's supposed to do something else (interesting because she tells me EVERY DAY that she knows she's supposed to be doing something but doesn't know what it is.)

But she reluctantly agreed to go and then kept a stoic silence for the first 20 minutes or so, by which time she forgot where we were going and why--and that she was angry with me for making her go, so the rest of the trip was answering those questions.  We were so late leaving Davis that we barely got to Hannah's in time and had no time for the lunch by the lagoon I had packed. 

[Aside:  her pill container has disappeared.  I asked her about it and she doesn't remember having one for the past 3 years.  I planned to look in garbage cans when we got back to Atria after returning from San Rafael]

When she got out of the car at Hannah's, she took off her jacket and left it on the front seat.

When her hair got all brushed out, I could see why I was willing do drive so far to have Hannah do it  She looked like a different person. 

When she looked at herself in the mirror she seemed surprised and asked "who did that?"  Hannah told her that she had done it.  When we got in the car, she picked up the jacket she had left and asked whose jacket it was.

The ride home was interminable because of endless backups because of rush hour traffic  She was very anxious if I got too close to a car in front of me, one time yelling out because she thought the car in front was backing up.  She kept asking what was making the traffic so slow.  Over and over and over again for about 3 hours.

I put on my playlist of music from the 40s, which has always calmed her down and she always sings all the words to all the songs, but I think it was entirely too distracting for her today.  She sang a couple of songs in spots where the traffic was not bad, but mostly she seemed irritated by the noise.

By the time we got to Atria, every bone in my body ached and I just let her out so I could drive home.  I decided I would leave the medicine search for tomorrow.  She was upset that I wasn't coming in and asked how she would find where she was supposed to go.  I suggested she head for the apartment she has been going to every day for the past 3 years.  As I drove off, feeling guilty, she was standing in the lobby looking around, trying to remember where she was.  I came home and took two Tums to quiet the heartburn that had been building up during the long ride.

A very long day and lots of frustration and biting of my tongue, but in the end, definitely worth it.
Other than a few kinks, the day went all right.  I think the visit with an old friend --whose name she knows!-- was a great tonic for her as well.

Monday, January 25, 2016

Take it Minute by Minute

It was yet another trip to Kaiser in Sacramento, this time to take my mother for some further in-depth eye films (no suspected problems, I don't think...I think it's just routine, which her doctor told her should be done at least once at her age).

I was feeling SO much better when we got home.  

As bad as she was yesterday, she was a different person today.  She has no memory of the telephone stuff and thinks she must be going crazy, but she never mentioned her age once today.  I did not hear her say the word "old" except once when the technician asked her age.  

We had a nice lunch with a woman named Shirley, with a gorgeous snow white page boy.  She said that "Mildred is the fun one," and recalled having lunch with my mother and her friend Loretta and how they made her laugh (my mother even kinda sorta remembered who Loretta is after I described her).

A waitress also came by our table and said something about how nice my mother is.

I was wishing that I could meet this nice, fun person that everybody seems to like so much!

But it's always nice having lunch with someone like Shirley, who is 85, and who is also strugging with dementia.  The two of them could not finish sentences, but it didn't seem to matter.
I left Atria feeling much better.

An hour after I got home, I had a call from someone at Atria saying people had seen my mother walking in the hall seeming agitated.  I don't know how bad it really was, but I talked with her and it was the same agitation about the feeling that she needed to be doing something but didn't know what it was that she was supposed to be doing.

I explained to the Atria woman that she says this every day and always seems to be upset that she can't figure out what she is supposed to be doing.  I really don't know if this was worse than usual, or if people just saw it this time.  But they decided they'd put her on a watch list for a bit and check her every couple of hours.

I am feeling so helpless right now.  I am making another appointment with my therapist to brainstorm.  I feel like I should make a "to-do" list for my mother each day so she will know what to do, though I can't think of anything to have her "do" since it's all done for her.  I could put activities at Atria on her to-do list, but she is adamantly opposted to having any fun or doing anything but sitting in her apartment that wouldn't work.

The guy with Alzheimers who writes on Facebook almost daily letting people know what is going on inside his mind has beeh helpful but he started writing very long screeds about what a terrible person Obama is, with many followers answering and writing their own angry messages that I finally unfriended him.

Today is my "day off.' No trip to Atria planned. 

Shop Therapy

I went shopping at World Market today.  

I didn't need anything...what I needed was shop therapy, something I almost never do.

I had left Atria very depressed. I had gone to pick her laundry up and had gone reluctantly.  I hate that I have reached a point where I dread going to see her.

But, dear God can we please talk about anything but how old she is????

This is what we discussed for an hour:
I'm old
I'm almost 100.
I can't be expected to remember things because I'm almost 100
It would be something if I made it to 100.
I don't think I want to live to be 100
Time is passing too quickly.
Time goes on whether you want it to or not.
I'm old.
I'm almost 100.
Over and over and over and over again.

I did manage to distract her by telling her I was cooking polenta for dinner tonight and recalling the first time I had polenta when we were on vacation when I was a little girl.  It was kind of a funny story and she laughed, then heaved a sigh and said "I'm really old, Bev" and we were off again back on the merry-go-round.

Oh, we did briefly discuss the fact that she's cold, and my suggestion that she put on a sweater or a sweat shirt was met with "that look" which says "you can't make me do anything I don't want to do." and she just sat there looking cold. but not admitting that she needed any cover-up.

I finally decided I just could not take any more, so gathered up her dirty laundry and went for a drive, the long way, so I had 10 minutes or so to decompress with my audio book.  Then I decided to try shop therapy.

I burned the handle of my wooden fork last night (not badly but enough that I wanted to replace it--sometime) and decided to go to World Market to get a new one.  World Market had only high end wooden utensils and no forks anyway, but I did a slow tour around the store, bought a couple of things and felt better, if still depressed, when I got home.

Then there was the telephone.  I got a call from my cousin Niecie letting me know that my mother called her and that she didn't get to the phone in time, so she called her back but only heard the sound of shuffling papers.  She called Atria to ask them to check on my mother.  They did and she was fine.  Then I got a call from her and when I answered she wanted to know why I'd called her.  I told her she had called ME and we decided that I'd just see her tomorrow.  5 minutes later she called back, having forgotten that she had called ("that last call wasn't me, but this one is").  She says "the phone keeps ringing and there is never anybody there and I don't know what to do." "How do people even know I'm HERE?" she asked.  I explained to her about Niecie and why the Atria people checked on her.  That seemed to go over all right, for 5 minutes until she called me AGAIN frantic because her phone won't stop ringing and there is never anybody there and she doesn't know what to do.  I suggested she just take the phone off the hook. She said "so you're going to take the phone off the hook?" I explained that I was in my house and I thought maybe SHE could take the phone off the hook.  She said "That's can leave it on the hook."

I was in the middle of cooking dinner but turned everything off and went over there, unplugged her base unit and took the hand set so she couldn't try to call out with it.  I also let Atria know what I was doing and that I would be back tomorrow to hook it all up again.

When I got to her apartment, she was sitting in her chair, across the room from the phone, holding her TV remote and looking at it in puzzlement.  She held it out to me and asked if I needed that. 

This  was not a good day.

Sunday, January 10, 2016

Dinner with Ned

We drove directly from Sacramento to Atria, where we were meeting Ned and Marta to have dinner with my mother and hear about Ned & Marta's Jamaica experiences that did NOT make it to his Facebook journal.  I called her on the way to the show to tell her we were coming, but that didn't help.  She was not in her apartment when Ned and Marta got there and I found all of them sitting in the lobby.  

It was clear she was disoriented and not with it.  At one point she asked us to all stop talking for a minute so she could collect herself.  She asked frequently where her purse was (she never takes it to the dining room) and asked who was going to pay for the meal.  Ned dominated the conversation and she would interrupt him to talk about his grey hair.

When we returned to the apartment, the jacket she had worn to the doctors twice last week was hanging over a chair and she asked if we knew whose it was.  When I told her it was hers and that she had just worn it two days ago, she got angry and said she had never seen it in her life.  I whisked it away and hung it up in her closet, but I won't be surprised if it is gone the next time she has to wear something warm to go outside.

While we visited a bit before leaving, she zoned out completely, read the newspaper and put nail polish on her nails and never so much as looked up at any of us. I wish there were a way to prepare her for guests, but even if you tell her 15 minutes ahead of time, she has forgotten by the time they get there and is flustered, confused, and disoriented.

Thursday, January 7, 2016

New Hobby

I guess I have a new hobby:  taking my mother to the doctor.

Atria did a mini mental assessment of her a couple of weeks ago, which I sent to her doctor, who called and said she wanted to see her.  Today I went to pick her up and found her hunched over on the bench in the hall on the way to her apartment.  I asked what was wrong and she said her back was killing her.  She was also coughing and had a red nose, indicating that it was runny.

I told her I had come to take her to the doctor and said I would go and get her coat and purse so she didn't have to walk to her apartment.  On the way to the car, when she leaned on my arm to help her with her back pain, i told her we would talk with the doctor about her pain.  She said that was the kind of thing that when you have it you don't want your doctor to know about it.  Sigh.

When we were waiting to be called for her appointment, I said we would also talk with the doctor about her cough and she said "what cough?  I don't have a cough."  Fortunately she was coughing so badly that they gave her a face mask to wear.

I also pointed out that her clothes were filthy and pointed out food stains on her pants and her blouse, which she has steadfastly refused to let me wash.  The last thing I told her when I dropped her off was to be sure and put her clothes in the hamper so I could wash them.  Let's see if she does it.

The first thing the doctor pointed out was that she was due for a retinopathy screening and so made an appointment with the eye doctor for Friday (couldn't go tomorrow since I work at Logos tomorrow).

Then she asked about her cold.  My mother said she had no cold.  Fortunately her lungs are clear, but she has a bad dry cough, which she could not deny because she coughed through the appointment.  She also wiped her nose on her sleeve, her blouse, and the gown they gave her in the exam room.

The doctor prescribed a cold medication (Benzonatate) which, I discovered when I checked the prescription, she is supposed to take 3x/day.  I'm note sure how I'm going to manage that.  I figured out I'd put the pill in with her regular pills, which she does take (almost) every day, but I didn't relish going to Atria twice a day to make sure she took 2 more pills.  But I figured I could fill a second pill dispenser with just the Benzonatate and then call her toward the end of the day and remind her to take the second pill.  That'll have to do except for days when I go there to visit anyway, when I can make sure she takes the third.

Next I brought up the back pain.  My mother --- I absolutely do not believe this --- said, "what back pain?  I don't have any back pain"  This was the woman who could not MOVE because she was in so much pain just two hours before, who complains every. single. day. about her back pain.  The doctor recommended Tylenol arthritis and also physical therapy.  Well, lots o' luck with that.  She might make it to one session, but I guarantee she would refuse to go again.

So then we went to the memory issue.  She didn't do any testing because the woman at Atria had done it, but had some suggestions, which include an MRI next week in Sacramento, the day after I go to Kaiser in Sacramento to the optometrist to get a prescription for my new glasses.  

Then there is the "memory class" she wants her to attend to assess possible treatment.  I somehow think that is a lost cause, based on her reaction to the "memory class" at Atria, but we'll give it a try.
It looks like 2016 is going to be filled with medical type appointments for my mother, as well as a lot of fighting to get her where she should be going for help.

Sunday, January 3, 2016

Best Day of the Year

It's only the 3rd of January and already I've had the best day of the year.

I felt kind of guilty not going to see my mother on the 1st, to wish her a happy new year.  I knew she wouldn't know it was the new year, but still, I enjoyed sitting at home and vegetating.  I made cookies and so had a big batch and was able to share them with Ashley when she came to check on Polly, who seemed to be sick all day yesterday, but who was fine this morning.  Amazing what rubbing Karo syrup on her gums to boost her blood sugar level can do!

But when the 2nd came around, I knew I had to go to Atria.  She would not have any idea how long it had been since I'd seen her, but I did.  She wouldn't be needing meds yet and she could go a few more days on dirty laundry, so this was just to be a visit.

And it started like all visits.  She didn't realize it was January.  Is it cold outside?  The trees are bare.  She's old.  She can't remember how old she is but it must be nearly 100.  She hasn't done anything exciting.  She can't remember if she ate lunch or not.  What am I doing tonight that's exciting? (asked several times) This is pretty much the extent of our conversation, over and over again, every time I visit her.

The last time I saw her, the day before New Year's Eve, she told me that she didn't know why, but she had been dreaming a lot about her mother.  She went through a period several months ago where she dreamed about her and would wake up and see her, until she got fully awake, and then missed her when she was gone.  I wondered, then, if my grandmother was coming to take her last daughter home with her.

I asked her if she had been dreaming about her mother again and she said no, she had not.  She mused again that she didn't know how her mother did it, raising 10 children.

Then I asked her a magic question.  It was like I'd found the key to open a firmly locked box.  I asked her what her mother did to discipline all those kids.

She started talking.  She told me that her mother never spanked her children, but would find a way to let them know how displeased she was.  She'd take away something they wanted to do or something like that.

She went on to talk about her siblings, how she herself never got punished much because she was pretty well behaved but her her next oldest sister, Marge (Peach's mother) was always the one who got into trouble.  She said she thought Marge went out of her way to find bad things to do just to get attention.

She talked about her youngest sister, Barb (who died of Alzheimers several years ago) and how she was everyone's pet because she was the youngest.

She told me again how when her father was asked why they had such a large family he always replied "because I loved your mother so much I couldn't keep my hands off of her."

She talked about her older sisters, who were grown and out of the house by the time she was born (she was #8 in a family of 10).  Her sister Mel was actually pregnant at the same time that my grandmother was pregnant with my mother and her son (who was killed in an auto accident at age 5) was born a few months before my mother.

She talked about how all the kids loved Mel and how exciting it was for her to come home and visit because she always brought goodies for all the kids.

She also talked about how everybody was afraid of Marie, Mel's next youngest sister.  I told her that I remembered the very first family reunion umpteen years ago when my mother told Marie she had always been afraid of her, which surprised Marie.

We talked about her oldest brother Jim and how everybody adored him and I recalled being so excited to get a wedding gift from him because I loved him so much and it was going to be something very special to me, but when I opened it it was a banged up silver bowl that his alcoholic wife had bought at a second hand store.

I don't know how long we chatted about her childhood and her siblings but it was like old times and then, suddenly, as if a switch had been turned off, she gazed out the window and sighed and said "I'm old, Bev..." and we were back into bare trees and what am I doing exciting tonight.

But for one brief shining moment, she was back.  It was the best day of 2016.  It is wonderful that this terrible disease has not yet robbed her of her memories of childhood.  They are as fresh and shining as if she is reliving them.