Journey Through Dementia

Journey Through Dementia

Tuesday, January 28, 2014

Fog and Smog

Many years ago, I was on a business trip for The Experiment in International Living.  I was visiting a woman in Temecula, which is in Southern California.  I was flying into the John Wayne airport in Orange County, the first and last time I have  done so.

I remember the flight was smooth and pleasant.  The sky was a brilliant blue without a cloud in the sky all the way, but as we began to approach the airport, if I looked down below, there was this brown gunky smog that covered the air above the ground, so you could not see the airport.

As we began to make our descent, I watched the plane leave the beautiful blue of the sky and sink slowly into the brown gunk, knowing that when I got off the plane, I would be breathing that stuff.  It was a sobering moment.

I felt like that today, when I got to Atria.  I had so completely put my mother to the back of my mind all weekend that it was like flying in that clear, trouble-free, smog-free world above the John Wayne airport. 

Visiting my mother this morning was like sinking back into the smog.

It was not a good day.  I could tell when I called her that she was not feeling well, and when I got to her apartment, I could see that she was not. She looked old and worn. She said she hadn't felt well for a couple of days. She still has not made a hair appointment and her hair is long (for her), stringy and she looks like the stereotypical picture you have of an old lady in a convalescent home.  She has to be reminded to brush her hair.  When I mentioned it to her, she ran her hands through her hair and said "Yes, but I just don't feel like it."

The woman who has had her hair done every week or two ever since I've known her, knows that her hair is too long, that she looks terrible, that she is going out in public with this horrible hair, and she doesn't care. That is very sad.  Her nails are also very long, with chipped nail polish and she picks at them constantly, trying to remove whatever is under the nails.  But she didn't want to have a manicure when my cousin Niecie offered to go with her to get one.

She couldn't remember if she had gotten dressed this morning and decided she probaby had because she was wearing a bra, though her pants look like they might be pajama pants (not that there's anything wrong with that, of course ... my sweat pants are often my pajamas ... it's just quite different for her.)

She is coughing and her nose is running, but she doesn't have a cold.   She knows she doesn't have a cold because colds are caused by a bug and she doesn't have a bug.  But she coughed throughout entire visit, with some mild congestion I could hear in her lungs from across the room.  I suggested she might like to see a doctor.  She says that when she has her nap after lunch, the cough will be gone.  (If it's not gone, or at least better tomorrow, I will take her to the doctor, whether she wants to go or not.)

No matter what subject I tried to talk to her about, she changed the subect to one of two things:  1) how old she is and living to "hunnert" and 2) what is going to happen to all her crap when she dies.  I could NOT get her off of those two subjects.  She wants to live to hunnert, but if she dies tomorrow that will be OK, but she wants to get rid of all her crap so I don't have to deal with it.

This is a recording.  An old recording, by now.

And if I die before she does, who will take care of her crap? (that was at least a new, if not entirely pleasant topic to deal with)

I know that one of the biggest adjustments for caregivers is the personality change, the loss of the person you've known and loved and this new person who inhabits the body of your loved one.  I know this is happening.  I've been dealing with it for some time now.

But when you have a chance to get away for a few worry-free days, and then come back and find things worse than when you left, it's very depressing and you realize that the big breath you have taken is filled, no longer with the clear clean air of the beautiful blue sky, but with the smog that is daily life.  Once you readjust, life goes on.  But it's an adjustment you have to make again and again, each time you take a bit of time off

Tuesday, January 14, 2014


This morning was a bit crazy.  I was frantically transcribing the interview and had to get to Atria by 10:30 because my cousin Denise was going to be there and we were going to try a Facetime chat with Peach, but she had a meeting to get to, so I needed to get the thing set up quickly (Atria has only recently offered wifi for guests).

I got to Atria a little late--about 10:45, but thought we could still reach Peach, but Niecie wasn't there.  I decided to get the call going anyway because Peach was waiting for me, but when I tried to connect, it said that she was not equipped to receive Facetime.  I tried sending her a text message, but it turns out, I just learned, that she doesn't have a cell phone, so I didn't reach her.

In the end, it didn't matter because by the time Niecie arrived, it would have been too late to call anyway.

Not really a noteworthy visit.  My mother told me on Saturday that her nails were so long she needed to have Niecie (who is a beautician) come and give her a nail trim, but on the phone she told Niecie she didn't need a manicure, so she didn't bring her equipment.  Then, over lunch, Niecie suggested they go together to a nail salon, which they have done before, and my mother refused to go.  Said she didn't need it, though her nails are starting to look like they are entered into a "longest nails" contest.

While we were visiting, the phone rang and my mother had a lively conversation with someone.  When I asked her who it was, she said she didn't know, but it was a "male relative" but she never caught his name.

I've talked with a couple of people recently who are disappointed that my mother isn't "getting better."  I'm surprised at that.  She isn't under treatment.  She just sits in her room.  And dementia isn't "treatable" anyway.  It can maybe be slowed down, but not cured.  Her stepson suggests we try an expensive herbal supplement for memory enhancement, which sounds like a lot of snake oil, but I told him I'd check it out.  Anybody ever hear of Phosphatidylserine?  I read enough about it to know that I wouldn't try to give her anything like that without a doctor's approval. Besides, she hates to take pills and won't even take Advil because she doesn't want to become addicted (yes, I know it's not addicted).  She'd rather live with her back   pain than take a pill and when I remind her that the medication helps control the pain, she just gets that flirty smile she uses on her doctors when she doesn't want to do anything they tell her and tunes me out.

She's her own worst enemy. I'm glad my dementia support group meets this week.

Saturday, January 4, 2014


I had a great idea today.  I've been waiting for Judi Dench's new movie, Philomena, to come out so I could take my mother.  She has been telling me for years how much she loves Judi Dench.  She's seen every episode of As Time Goes By so many times she knew them by heart.  Of course, now I don't know if she remembers that, but she did show some sign of recognition when I told her I wanted to take her to the new Judi Dench movie when it came out.
December has been good for her.  At least the last part of it.   She has been more "with it" than she has in a long time, I'm sure due in great part to all the stimulation she's had.  It's not perfect.  I've found gifts from her in the apartment twice and when I asked her who they were fromshe answers "I don't know.  I don't know who has a key to my apartment.  They just appear.  I don't have a clue who leaves them."  (So if you brought her candy or a nice bottle of Claret, let me know!)
But she has remembered upcoming events.  She remembered when the house cleaners were not going to clean the house.  After a month of talking about it and wondering about it, by the time Jeri was due, she remembered she was coming.   She was able to hold her own in conversation, most of the time.  I was very pleased.
I was also very pleased when I called her two days ago and told her I would pick her up today and we would go see the Judi Dench movie...and she remembered it two days later.  Be still my heart.
Before I left home, we had a text from Jeri saying that, miraculously, she had landed safely in Boston.  Looking at the weather reports which predicted blizzard today, I thought she would be trapped here for another day, but no...she is home safe and sound and I'm sure Phil and Lester are very happy to see her.
So I picked my mother up at 1.  I knew that parking might be tricky and I wanted to allow time to find a parking place and to let her walk slowly to the theater.  I thought we might get a nice gelato at the little stand attached to the theater while we waited.
We got to the parking lot well in advance of the start time for any of the movies.  And the parking lot was full.  Both levels.  Full.   You can't park on the street and go to a movie because street parking is only 2 hours and movies are generally over 2 hours long.  I drove around and around.   There is a parking lot several blocks away where you can usually find parking, but there was no way she would be able to walk the distsance from there to the movie theater that was showing Philomena.  I kicked myself for not having Walt drive us down and pick us up afterwards.
Parking in Davis has become a nightmare, and the city only makes it more difficult.  No three hour on-street parking (you're supposed to ride your bike, of course, but not if you're 94 and if you have bad knees at 70!). And even the 2 hour on-street parking is a pain because if it is two hours, you have to move your car, but you can't move your car to just anywhere.  You have to be at least a block away fromwhere you originally parked.  So if I'm at one corner and there is an open space at the other corner, I will get a ticket if I take it.  i have to go farther.
This completely eliminates the possibility of having lunch and going shopping, "patronizing downtown Davis" like they always tell you to do.   It's the reason why I rarely go downtown for more than quick stop somewhere.
So it was a bust.  No place to park.  We just turned around and drove home.  I was disappointed because I can't take her tomorrow.  I'm hoping I'll be able to take her on Sunday, only this time I think I'll have Walt chauffeur us just to be certain.
And before you let me know how convenient it would be if I had a handicap placard, I suspect she would rather die first than accept something that says she is "handicapped"...but it also requires a note from her doctor, whom she had not met (the doctor she saw in May was a bus) and whom she is not interested in seeing unless "she has something wrong with her."