Bittersweet

Sunday was a bittersweet day from start to finish.  We started at Atria, meeting Ned and Marta for brunch, to celebrate my mother's birthday, which is tomorrow.

We've been over this for a week or more, but she didn't remember, of course.  After her surprise that I was there, she was surprised again when Ned and Marta showed up, and especially when they wished her a happy birthday because she never realized it was her birthday.

When we all went to lunch, she asked why and then was surprised to find out it was her birthday and then as we sat down, she was astonished to learn it was her birthday.  One thing about dementia--you get a lot of nice surprises!

For lunch we asked for two servings of brownie with ice cream.  Walt wanted one of his own and Ned, Marta, my mother and I shared the other, which Ned cut into 4 equal pieces.  She laughed when served, then looked away and when she looked back, she asked where that had come from and why were we having dessert and then was surprised to find out it was her birthday.

To my surprise, when we returned to the apartment, a woman, pushing a woman I had never seen before, knocked on the door.  The woman who knocked obviously knew my mother and it was someone I had never seen before, which pleased me because my mother kinda sorta recognized her, which means she has made friends with someone on the staff.  Anyway, the woman was bringing her a card and a piece of cake (which will sit in the fridge until I finally throw it away next month)

All things considered, except for the dementia part, it was a good day, she was in good spirits, we laughed a lot and then Walt and I went home, while Ned and Marta spent another 3 hours or so there until time to go to our second event of the day.

Bad News

I learned today that Peach has brain cancer.  Doctors say she has "2 mos to maybe 2 years."  All I wanted was to talk to my mother.  After first being confused ("who is Peach?") and then upset ("oh no") her  reaction was a dismissive "Well, we all have things happen to us."

I still want to talk to my mother, but she isn't there.

A Flurry of Excitement

Today was Lunch at Atria day and it had a bit of a different twist to it.  For one thing my mother's back has really been bothering her.  So much so that she let out a shriek when she went to sit down and she can't make it all the way from her apartment to the dining room without sitting down.  But she doesn't need to see a doctor.  Not her.  The doctor told her 10 years ago that when it hurts she should just sit down and that's what she does.  Of course it's not possible that the disintegration in her coccyx has worsened, 'cause the doctor told her all she had to do 10 years ago.  I'll tell ya, for a woman who has always been so intelligent about everything except her health, she can be really stupid sometimes.  That Christian Science upbringing that she discarded decades ago pops up whenever it's convenient.

I'm going to take a different track with her.  I'm going to leave the decision of whether to see the doctor or not up to her BUT remind her that the thing she is most terrified of is being incapacitated and the fact that her pain is getting worse is a sign that the back is getting worse and if she doesn't get it checked out, she may very well end up incapacitated.  OR it may well be that she won't be incapacitated but will have to use a walker to get around, another huge fear (she's above all those poor people who use walkers.  SHE doesn't need a walker!)  Let's see how that goes over.

Someone in the Memory People group on Facebook suggested we try medical marijuana.  That had never occurred to me, and having zero experience with marijuana, I wouldn't have a clue where to find it or how to use it.  But it is something I might explore if the doctor thinks it might be a good idea.

But anyway, we eventually got to the dining room and "her" table was full, so we sat at the empty table next to it.  As she was sitting down, she got this funny look on her face and I looked off to the side and there was Loretta entering (on her walker, I might add).  Loretta, as I have said before, is my mother's best friend at Atria.  Neither of them knows the other one's name, though they have been friends for two years, but they enjoy each other so much, especially when they have wine with their meals.  They like teasing and insulting each other, just like my mother and her friend Paula do and I just love it.  Meals with Loretta are my favorites.

As usual, my mother poured over the menu before deciding on fruit salad and vegetable soup, and then couldn't remember what she was going to order.  When they brought her vegetable soup (which she has every day), they had added extra vegetables on top of the broth and she looked disgusted and tried to decide why she had ordered that.  She obviously was not going to eat it, so I took the veggies floating on the top of the broth off and put them on a separate plate and then she recognized her order and she ate the broth. 

We were enjoying lunch when suddenly there was a shout of "HEY!!!"  It was a woman who is probably the youngest resident of Atria, but I think she is there because she is in a wheelchair and probably this was the best place for her.  She was shouting "Is there someone who knows the Heimlich maneuver?  We have someone choking here!"

At the table next to her, on the other side of the room from where we were sitting, suddenly all the wait staff and some of the Atria facility people surrounded this woman and I guess managed to successfully "heimlich" her but there remained a lot of people around her for awhile until they were sure she was OK. 

As for my mother and Loretta, they kept insulting each other throughout the rest of lunch. At one point I asked Loretta which of her children she had in Davis and she told me it was her son.  I asked her how many children she had and she couldn't remember.  She thinks she has grandchildren. She just remembered that they have taken away any sharp objects in her apartment and are choosing her clothes for her and she now has to wear colors she never wore before.

It's easy to see why she and my mother are such good friends.  And the best thing is that when they are together, I have no qualms about joking about the fact that neither can remember anything.  They just laugh at me and with each other.  I'm sure they never see each other outside of mealtimes, but they do enjoy their meals together.

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.