A Good Day

It was a relatively good day, as days go.  I brought her pills and some toothpaste (I noticed she was out), and I picked up her laundry.  We sat and had a visit and actually between discussion of the leaves on the trees and asking what I was doing exciting and telling me she was getting old, we had some conversation that covered new topics.

She is fixated on when Jeri will come back, which she started asking me the day after she left.  problem is I've always been able to give her a rough time when Jeri will visit next, but since she came out for our anniversary, she didn't come out in August, as she usually does, and since she & Phil are going with Ned and Marta to Jamaica at Christmas, she wont be here then either.  So I can't even give her a rough time of how long it will be before she sees her again, though she asked me about that several times yesterday.

But she was in good spirits today and not the limp dishrag she has been on recent past visits.  The hour I spent with her was more pleasant than usual.

Frustrations

One of the big frustrations of my mother's condition is that I feel so incredibly alone.  I never thought I would say that I miss my sister (who died in 1971), but I do.  It would be so nice to have someone to share this with.

Her step son, who used to have dinner with her every week or more often, has discovered that, golly gee....it's a long drive from Marin County to Davis (which I used to make in the other direction 1-2 times a week) so he now comes every month or 6 weeks.  He is invaluable, though, in that he handles all of her finances.  I'd be lost without him.  I also send reports to her stepdaughter and she never even indicates that she has heard from me.  The step grandchildren who, I thought, loved her, haven't seen her in nearly 3 years.  Just too far to come.

But she's been the "queen" of her own family, all these cousins and second cousins that I have who have worshiped her for years and waited on her hand and foot whenever they saw her.  There is a private Facebook group set up for the family and I post reports on how she is doing and how I'm feeling and nobody ever says anything.

One of my cousins (the one I would least expect to say anything) just wrote "Sorry to hear this Bev...It's tough.."  It was THE FIRST TIME in three years that anybody had given me any emotional support at all.  It almost brought me to tears.

One cousin comes occasionally to give her a manicure and that is very generous of her, but even she is coming at longer intervals now.  Nobody else has come to see her, and if they call her, I have asked them to let me know so I can keep track of who has contacted her, but either they don't call or they don't think letting me know is important, and though I know she enjoys their calls, she never remembers after she hangs up.

One reason I set up this blog (other than keeping a record for myself) was so that the family could keep track of her, if they wanted.  To the best of my knowledge nobody has ever looked at it.

It just makes me feel that I'm out here on my own without anybody to say "there, there...we understand. You're doing OK, kid."

My kids are wonderful and Walt does what he can.  When his mother was in her last years, he had  a brother and a sister to talk with.  I just feel so totally lost some days.

Memory People

One of the most helpful things I did recently was to join the "Memory People" group on Facebook.  It was started by author Rick Phelps after he was diagnosed, in his 50s, with early stage Alzheimers.  He decided to document what he was going through and wrote a book, "While I Still Can."  Realizing that he eventually would reach a point where he could no longer t ell his story, he collaborated with Gary Joseph LeBlanc, whose father had died of Alzheimers.  I found it a helpful book.

But he also founded the Memory People group for people with memory diseases and those caring for them.  His Alzheimers is progressing, so he doesn't contribute that often, but when he does it is particularly helpful.

After my mother's day of being so restless a couple of weeks ago, I posted a note to the group and today got this wonderful explanation back from Rick.  It doesn't help solve the problem, but it gives me insight into what is going on in her brain:

When I awake, everyday, I am unsure of where I am, what is going on and things like that.

Think of it as being on vacation and waking up in the middle of the night, being disorientated and not knowing where you are or what is going on.

This is how it can be for a dementia patient in their on home, in their own bed. The brain for whatever reason does not allow you to recognize where you are.

And from there, stress ensues and confusion just snowballs. Sometimes as in your Mothers situation, Bev, she just cannot figure out what is going on, but by keeping busy or saying there is something she should be doing takes her mind off of being so confused.

I don't know this is happening, I am just sharing what goes on with me. Not everyday, not every morning, but more often than not. And chances are this will get worse as the disease progresses.

I am sorry she and you are both dealing with this. Calm her, reassure her, and whatever she thinks needs to be done, agree with her. And tell her you will both make sure that whatever it is is done together. Sometimes this will help. Sometimes...

She tells me so often that she feels like she should be doing something that this explanation helps a lot to help me understand what that must mean for her, and to try to find a way to help her feel calmer about where she is.

Edge of a Scream

 At the height of my Judy Garland craze, back in the 50s or 60s, there was an article in one of the movie magazines that I was hooked on, about Garland.  I have read lots and lots and lots of articles about her over the years, but this is the title I always remember:  "Always on the Edge of a Scream."

There have been times throughout my life, for one reason or another, when I have felt that way, and today I realized that one of my big problems is that I am living every day wondering if my mother is alive or dead.  Is that overly dramatic?  Probably.  But that's how I feel.

After leaving her yesterday, I worried about her all the rest of the day and woke up worried about her.  I had told her I would call to remind her to take her meds.  I decided I'd wait until after lunch, since sometimes she sleeps late.

I started calling at 1 and got no answer, but if she went to lunch, it's possible she just wasn't back.  Between 1 and 2:15, I called her 5 times and there was never an answer.  I didn't want to call Atria to check on her, so I drove over there, certain I would find her dead.

The fact that there was no newspaper in her mail slot was a good sign that she had at least gotten up that morning.  I knocked and she answered the door.  I asked why she hadn't answered her phone and she said it had not rung.  I told her I had called her five times.

Then I noticed that her phone was not on the charger, where it should be and I looked around and couldn't find it.  I decided to call it to see if it would ring.  The phone in her bedroom rang, which she heard because she was standing near the door to the bedroom.  After a search, which she didn't understand why I was undertaking, I finally found the phone, under a stack of newspapers at her elbow.  It was dead.  Once I put it in the charger, it rang as soon as I called it. 

But when the phone rang, she held up the two remotes to the TV and told me that those hadn't rung.  I had to explain that those were for the TV and were not telephones.

She said she felt fine (though had NOT taken her meds) and she couldn't understand why I was so worried.  I stayed for awhile, but not the whole hour because we were expecting our new refrigerator to be delivered.

As I went out to the car, I felt better knowing why she had not answered the phone and that she was alive, but it hit me that with everything I do almost every single day there is this cloud over my head wondering if my mother was going to die today or if she would live to "hunnert."  Not a fun way to live.

I miss my sister.

That Helpless Feeling

It was another day I left Atria feeling like I wanted to cry.

I was bringing my mother's meds for next week to her.  I knew she would be running out of them today and didn't want her to skip a day.

I knocked on the door to her apartment and she called out, as she always does, "come in!" which is silly because she never leaves the door unlocked and always has to come and unlock it.

She answered the door with unkempt hair, as if I had awakened her, and the first thing she said was "I forgot to go to lunch" (It was about 2 p.m.)

I went to replace last week's pill container with the new one and discovered she hadn't taken her pills for almost the whole week. She tried to convince me she had taken them, but that's something she can't talk her way out of because the pills were all still there.

We sat down to talk and I reminded her, as I have every day for the past two weeks, that we are going to San Rafael tomorrow to have lunch with her friends.  She looked surprised, then got huffy and said "I never agreed to that!"  Then she said that she felt "terrible" and just didn't feel like going "but you go and have fun."  I reminded her that this was a lunch for her birthday and if she couldn't make it her friends would undoubtedly cancel it.

Based on her reaction today and how she was last time we met them for lunch, I've decided we just won't do that any more.  The first few times we went to these lunches were wonderful and such a tonic for her, but not really any more. She enjoys the lunch, once we get there and she realizes that she knows the women we are meeting, but the anguish of getting ready to go when she doesn't recognize the names of any of the people we are going to see, and the nervousness of leaving Atria, and the hour long questions on the drive down about who is going to be there and who decided we were going to meet and why were we going to meet, over and over again are exhausting for me, but worse for her because she really is afraid she is going to get lost, going to have to talk to people she doesn't know and isn't comfortable being away from her familiar surroundings.  She is also nervous when looking at a menu because it's impossible to decide what to eat and she usually whispers to me to choose for her. (Things are better on the ride home because I have a playlist of music from the 40s and 50s that I have downloaded from iTunes which has all of her favorites and she sings along with every song all the way home -- proving that even people who can't remember anything else can still recall song lyrics!)

I tried to identify why she wasn't feeling well and she doesn't know.  It's not pain, it's just...something.  I asked if she had breakfast that morning and she said no.  I pointed out that she hasn't had her pills all week and hasn't had anything to eat today and maybe that was the reason why she was feeling so bad.  But that requires too much cause-and-effect processing to sink in.

She once again explained her not taking her pills by reminding me that she has never been a "pill taker."  Whenever her back hurts and she moans about it and says her back is "killing her" and I ask her if she has taken a pain pill she says "No--I'm not a pill taker."  In truth I don't know how much, if any, relief Aleve (which her doctor suggested she take) would give her but we'll never know because she's not a pill taker, even if it might relieve her pain.

We left it with that I will either call her or come over every day, now, to remind her to take her pills and I will wait on the phone until she has taken them. We'll see how long that lasts.  (I will also remind her to go to lunch.)

But she sat there in her chair, looking like a limp dishrag, with dark circles under her eyes, staring out the window, sighing and telling me she was old.  When I mentioned she would be 97 in 2+ weeks, she seemed surprised that she was so old.  Then she'd tell me she doesn't know why she doesn't take her pills because she sees them every day.  That is always followed by the inevitable "stupid, stupid, stupid!" indictment she is fond of giving herself.  I tried to remind her that it's not because she is stupid but because her brain doesn't work right any more, but that, too, is more than she can process now.

I tried to get her to laugh and remembered a photo Laurel had posted of Lacie, which I was able to call up on my phone, and that did make her smile and ask who the cute little girl was.

Sigh.

It wasn't a "visit" today.  It was two people sitting in pretty much total silence for an hour until I decided it was time to leave.  She didn't even tell me how pretty the leaves on the trees outside are today.  That was definitely unusual.

A Sorta Perk

One of the perks, I guess, of dementia....

I've been concerned because she doesn't seem to be eating much.  She orders the same thing at every lunch -- fruit salad and vegetable soup (and then does not eat the vegetables, so she's really just having a cup of vegetable broth). 

We went to lunch and the entree was a hot turkey sandwich, which I ordered and my mother ordered a HALF of a bowl of vegetable soup, since a bowl (about a cup) was too much for her.  The waiter didn't hear her right and brought her half an order of the turkey sandwich, which she ate unquestioningly, not realizing he had brought the wrong thing.  So today, at least, she got a decent lunch, which she ate.

Poor Nannie

My mother is always saying that though she remembers her mother-in-law's name (Pearl), she can't picture her.  So today I found a picture of my grandparents and showed it to my mother.  She didn't have a clue who they were.

Restless

She was restless today.  Said she knew she was supposed to be doing something, but didn't remember what.  Of course she has said  this every day I have seen her for the past 2+ years, but she doesn't know that.  She always asks if I ever feel that way and I tell her I do, which seems to reassure her that it's OK to feel disoriented, but today it seemed worse than usual. 

When I first sat down, the first thing she said was "did you bring those?" indicating some cheap trinket necklaces in purple and green hanging from the lamp.  I told her I had not and that I hadn't seen them before.  She said it's very confusing because whenever she gets up, she sees that people have brought things into her apartment and she doesn't know who or why.  Obviously she had a visitor that she can't remember.  I've asked people to sign in on the calendar when they visit, but nobody ever does.

She didn't want lunch, just fruit salad (which consists of less tan a cup of fruit).  The waitress asked if she wanted a large  fruit salad and I said that yes, she did, but when the bowl came (the size of a cereal bowl) she said it was too much and only ate about 2/3 of it  I worry that she isn't eating and I've asked Atria if they can check and see if she goes to meals every day.  They said they would, but of course I have heard nothing from them since then.

She complained all thru lunch about feeling odd and that she just wanted to curl into a ball, go to sleep and hope the feeling went away.  When we got back to the apartment, we sat for a bit, but when I got up to leave, she didn't get up and walk me to the door, as she usually does.

I read a book today called "My Roller Coaster Ride with Sallie: an Azheimers Story."  Sallie is SO much like my mother, until the later stages of Alzheimers.  The difference is that she used a walker and a wheelchair when necessary and she was friendly and outgoing with people in the facility where she lived.

I did kind of laugh, though, when we went into the dining room.  Robert, the 98 year old retired veterinarian, was sitting at "her" table.  She's usually the 4th there, but when I come, there is no room for me.  But as she passed by she tweaked Robert's ear and he turned around and she gave him a smile.  She has always needed a man in her life and while Robert is not a love interest, he is at least a man in her life and she turns on the old Chubbie charm.

When we left the dining room she went to say something to Loretta, probably her best friend there  They don't know each other's name and see each other only at meals, but they have the same humor and enjoy each other.

Forgetting

Today was the first time she forgot Fred's name.  She said she couldn't remember my father's name and I said "Al."  She said that didn't sound right and I said "how about Albert"  She said that sounded right, but t hat she had never called him that.

Then I asked her if she remembered the name of her next husband and she got this blank look on her face.  "I had another husband?" she asked.  I said that yes, she did and that it had been Ed's father.  She looked confused.  I said 'well, you'd better remember because I'm supposed to bury you with him."  "Bury me with Ed's FATHER?" she said.  When I said his name was Fred, then she remembered.  But that was definitely a first!

Puzzles

 I got this bright idea to ask her if she wanted to go upstairs and work a puzzle.  She said yes!  So we went up to the puzzle tables and found a puzzle that apparently had been finished but someone was taking it apart.  We decided to put it together again, about 1/3 of the left side of the thing.

We sat there for two hours working the puzzle.  While we were working, the Brain Gymnasium (remember that?) was going on in the room next to the puzzle area and hearing the group laugh and talk together made me sad that my mother refuses to consider going.

I noticed something interesting about her.  My mother has been a puzzle fiend all of her life.  We both are.  We are very good at jigsaw puzzles.  We look at pieces and generally find the right piece for a certain space without having to try a lot of them.  But we stayed to complete the puzzle and I know she was getting tired.  That's when I noticed she would pick up a piece and seemed to have no idea how to turn it to put it in a spot.  She'd try large round edges into small holes.  It didn't last very long, but I was surprised at how she seemed completely incapable of doing the puzzle.  Fortunately she snapped out of it soon and was zipping through the last few pieces, but I had the distinct feeling  that this was part of her dementia too.