I Used the "D" Word

I was going to take my mother to Kaiser to get her flu shot and a blood test her doctor had requested and I wanted an early start.  It was another of "those" days.  She apologized for feeling "confused" today (why is this day different from other days?)
 

First there was the now frustratingly familiar Search For the Kaiser Card.  She always goes to find it, can't find her purse, I tell her where her purse is, she searches her wallet, can't find the card, I tell her where it is in the purse itself.  She can't find it.  I take her purse and show her where it is.   She is relieved. 

Then we go to the car.  In the car she says "now I have to have my Kaiser card, right?" and the fruitless search begins again until I take the purse from her and show her where the card is again.

This time we had a side trip first, to a jeweler to get a new battery put in her watch.  She has been lost without the watch, though she doesn't really need it, but she's worn it all of her life, so I found a parking place near the jeweler and we went in.  We talked about the watch and the need to have it back by Friday (or I couldn't pick it up for a month).  All the while I'm talking with the clerk, my mother is looking in her purse for her Kaiser card. 

While we are there, I ask about her wedding ring.  She has been complaining about it for a year.  It's much too tight and she can neither get it off or turn it on her finger.  She can no longer bend her finger because the ring is cutting off the circulation.  I have been offering for a year to take her in to have it cut off and resized, but after I finally have her convinced, she decides she wants to wait awhile.

But we were there and the jeweler looked at the finger and said the ring needed to be cut off.  My mother said that was funny because she never even noticed that it was too tight.  She wanted to wait and have it done after I got back from Iowa, but it had taken me a year to get her there and we were going to have it done NOW.  Fortunately, she does respond to things like that positively.

They promised me the ring could be resized and picked up on Friday too, but when they got it off, the dent in her finger was so deep the jeweler said there was no way he could size her finger and he wouldn't size a different finger.  She has to massage cream into her finger while I'm in Iowa and then go back in December to get the finger sized so they can enlarge the ring.

Next we went to Kaiser and she could not, of course, remember why.   When we got in the building she didn't have a clue where she was or why she was there.  But we got our flu shots and I took her to the lab for her blood test.   Before we left the testing room, I checked to make sure she had her Kaiser card, which she did.

We got in the car and head to Applebees for lunch.  I decided it would be nice to take her somewhere other than Atria and she used to eat at Applebees frequently with a friend of hers.  When we looked at the menu, it was immediately apparent to me that there was nothing there that would not be too much for her, so I ordered an appetizer platter for us to share that that was an excellent decision.  Good me.

When the waitress was ready to give us the check, my mother went for her credit card (which is in the same pouch as the Kaiser card) and could not find it.   It had disappeared.  We both looked through her wallet and purse three times and it was not there.  She thought maybe she could pay the bill with her Social Security Card.  I paid the bill.

I KNEW we had the card in the blood-letting room at Kaiser because I saw it.  We went out to the car to see if she had put it in the pocket of her jacket (no) or if it had fallen on the floor again (no).  I took the purse from her one more time and found a zippered pouch I had not checked before.  It's part of the design on the front or her purse and I've never seen anything there.  But there was the pouch with the two cards.

I cannot tell you how many times she was confused and how many times she kept telling me she hated being dependent on people because she had always prided herself on her independence.

That's when I used the "D" word.  I have always talked about her "memory problems" but have never actually said "dementia."   I told her she had dementia, like her mother (not Alzheimers like her sister) and talked about what the dementia does, that it's not treatable, and that it was time for her to accept that she has this condition and just let people who love her take care of her.   

I don't know why I was afraid to use the "D" word.  I know that she is divorced from her emotional reactions to things (like news of Peach's cancer), so why did I think she would be upset to hear me talk about her having dementia?   She didn't bat an eye.  But the word has been spoken and I can now feel comfortable saying "dementia" around her.  (Of course she won't remember!)

On the way home she said, as she always says when in the car, "If you let me out here I wouldn't have a clue where I was or who I should talk to or what I should do."  I tried to put myself inside her brain and try to figure out how scary it was for her to have no ability to recognize landmarks or to have a clue where she was at any time.  She can finally recognize the driveway to Atria, but we have to be turning into it before she recognizes it.  

But it did help me to try to feel what she must be feeling in her head.  I need to do that more often because when I do it helps me to be more patient with her.

I Miss My Mommy

I went to Atria yesterday, because I wanted to give the latest news about Peach to my mother personally, not over the phone.  I've said this before and will probably say it again, but one of the most difficult things for me about her dementia is the disconnect with her emotions.  It is so hard for me to deliver sad (or happy, for that matter) news to her and have her have almost no reaction.

Our dialog yesterday went something like:

ME:  "Peach heard that she has stage 3 cancer and will have to start chemotherapy."

HER:  "Oh dear.  Well life goes on, whether you want it to or not." Then she looked over a a cabinet where there was a bouquet of roses that had been given to her this week, and totally dismissing the news about Peach she said, "Look at those flowers.  They are dying.  They were beautiful, but now they're dying."

I'm not sure whether my tears were for Peach or for the fact that my mother and I could not discuss Peach's upcoming chemotherapy treatment and her fears about it.  Once she had digested the news, she was no longer interested.   We sat there for awhile longer, talking about how old she is, how all of her siblings are gone, and how it can't be cold outside (it was) because the leaves on the trees were not moving, so it must be hot and how she didn't watch the World Series because she somehow forgot it was on in between the time I called her and the time she walked back to her chair after hanging up (so I didn't bother to call her yesterday).

It was one of those days where I needed to have my mother to talk to, and couldn't bear to be with this person who looked and sounded like my mother, but who wasn't the mother I needed.  I know it's not her fault and I will be fine when I see her next time, but I cut my visit short, went out to the parking lot, and sat in the car to have a little cry.  (I seem to be having these "little cry" moments this week.)

She'll be the death of me

I went to pick her up for her doctor's appointment and not only did she not remember having an appointment (though I sat in front of her so she could hear me making it...but that doesn't surprise me) but she feels absolutely fine and does not remember ever feeling nervous, so she doesn't know what she would tell a doctor.  Maybe I should make sure she has a vodka tonic every day.

I don't know if canceling her appointment was the right thing to do, but given that she is fine and doesn't ever remember being so frantic about being so nervous, it probably was.

I wrote Ned, Ed and Jeri to check in with her, at least by phone, over the weekend while we're in Santa Barbara.

I'm sure she'll be just fine.

I'm not so sure I will !!!!

Anxiety

My mother called and asked me to come over, that she had "some things to talk with me about."  I wondered all the way over what she perceived I'd done wrong, or what she could possibly want.

Turns out she's been having anxiety attacks for the last 2 days (I saw her on Friday).  She can't stop shaking.  Gets up and doesn't know where she is what she's supposed to be doing. She wanted me to fix her, but obviously she needs some kind of mild sedative, and definitely needs to consult a doctor.  We talked a lot and she agreed.  I called Kaiser in front of her and made the appointment (which she doesn't remember my doing, but still agrees to go).  I tried to get her laughing by laughing when she tried to pull the sleeves of her shirt down to cover the couple of old age spots she had and said everyone will think she's old.  I told her she tells everyone her age and everyone KNOWS she's old.

I got the bright idea to fix her a vodka tonic, which I think was a good idea.  Then I said I'd stay for dinner and then changed to taking her out to dinner.  I suggested that she hadn't had Chinese food in awhile.  My god she had FOUR helpings of chow mein.  I haven't seen her eat that much in months.  I think she was OK when we dropped her off but I will be curious to hear what the doctor has to say. 

I told her I can't imagine how terrifying it must be to be HER and talked openly about the worsening memory loss.  I have never yet used the "D" word with her.  I don't know if she could handle it.

This is not a good time for this, with us being ready to go to France (in 2 weeks).  I'm going to have to count on Ned to keep tabs on her while we're gone.  But I'm waiting until after we see the doctor before talking to him about it.

The nice thing is that as soon as the plane lifts off, I have no choice but to leave it all behind.

But a part of me is beginning to feel like this is a "bad idea" trip!

Today at Atria

Today was one of those days I have every so often, where I felt like crying when I left Atria.  I went there for lunch and we "visited" (such as visits are these days) beforehand.

A week or so ago, I had disturbing news about the health of someone we both love very much.  The wife had found a breast lump and was going to see the doctor.  After her appointment, the doctor said he was pretty sure it was cancer.   I hesitated about whether to tell my mother or not, but ultimately decided to tell her, even though the extent of the cancer and the expected treatment had not yet been decided, mostly because I wanted to share my own feelings about the sad news.

It hurt a lot that I was feeling so bad for my friends, the wife and her husband, that they are going through this and that my mother treated it as if it were something trivial. Now it has been decided that a mastectomy will be performed next week and my heart is aching for my friend.

My mother can't seem to process the news in any emotional part of her brain.  She had a momentary expression of sadness, but then went on to ask if the weather was hot outside. I know it's her disease and I know that if she were in her right mind she would be much more concerned, but she treats it with all the interest she has for anything these days.

Maybe it was a bad idea to take her to San Rafael for lunch and experience that one brief moment of normalcy.  It's definitely gone and much as I want to talk about the medical condition with her, she just can't grasp the seriousness of it, the potential danger, or anything else about this cancer.  Or that in a matter of just one week, our friend has gone from being just fine to having her breast removed, but my mother can't process what a trauma this must be for her.

Add to that our lunch.  We sat at a table alone.  I don't know where Margaret, who usually eats at that table, is.  She hasn't been there the last couple of times we have been there.  I watched all the tables of people around me chatting and I realized that I was feeling like a mother whose kid isn't one of the cool kid, the kid who people don't seek out for conversation at school.  People would come by our table, glance down and move on.

But then my mother told me that if I weren't there she would just take her lunch to her apartment.  Then she sat there criticizing everyone in the room.  She commented on how everyone was chewing and made it sound like a negative judgement on people chewing their lunch.  She always comments that there are so many people with grey hair there and sneers about the people using walkers.  This becomes a litany when there is nobody else at the table, repeated over and over again.  She doesn't want to be "one of them," so she'd rather eat by herself.

She is complaining a lot about her back, but of course a walker is out of the question.  I normally don't even mention it any more but she complained about pain so much today that I did, but I think a walker would be the worst thing ever for her.  If she had to use a walker, I think it would literally kill her.  Her pride in not needing one (even though she does) is what is keeping her limping along to "hunnert." And of course seeing a doctor about her pain is out of the question.  She doesn't need a doctor.

So it was just a sad day.  They are usually somewhat sad days (which is why the not-sad days are so special!), but most days I handle them better than I did today. I want her to feel something, dammit not just sit there musing about whether the leaves rustling in the trees mean that there is a cool breeze outside, but unwilling to open her door to find out.

She told me for the umpteenth time about the new pathway they created just steps from her door.  "Have you tried it out?" I asked her.   "What for?" she said.  She could see it just fine from her chair and didn't see any reason why she needed to go and actually walk on it.

She's now hoping that she does live to hunnert because she thinks that would really be a neat thing to do.  If she does, I might be in a home myself by then!

Just Like Old Times

I have had the best afternoon, and I came home from San Rafael on a real high.  I also came home again wishing I knew more about the process of dementia.

After how vague she was yesterday, and how she was at first today, I wasn't sure how this was all going to go.  I called her 30 minutes before I was going to pick her up, to be sure that she was up and dressed.  She was, but didn't remember about lunch at all, and was delighted that we had this lunch date with her old friends.

I picked her up at 10 and when she got in the car, she asked where we were going.  I told her San Rafael.  She asked if it was just going to be the two of us for lunch, I told her that her friends were coming.  She was thrilled and said that she wished she had known and she would have gotten dressed up more.  Sigh.

On the hour and a half ride down to San Rafael, I tried to talk about things I thought would interest her, but she only wanted to talk about three things:  how pretty the trees were; how dead the grass on the hills was and how we needed rain so they could be green again; and how they needed to plant stuff in the harvested fields.  Occasionally she would ask where we were going and who was going to be there, but mostly I realized that the only thing that really interests her is nature--not animals or birds, but growing things.

We were the first to arrive at the restaurant and sat waiting for the others.  Four of the five expected showed up (Jeff, the last one to arrive, didn't come for about half an hour because he'd been stuck in a meeting).  It was like a lightbulb switched on.  She was excited, happy, bubbly.  The sparkle was back in her eyes.  Not only that but they talked about mutual acquaintances that she remembered.  (I have seen her say "yeah" to questions asked when she has no idea what the person is talking about, but in this instance not only did she remember the people, but also remembered personality characteristics about them.)

Everybody but me ordered a drink (my mother had two) and a toast was made for her 95th birthday.

With Cinni

We ordered lunch and, on Cinni's recommendation, I had their lamb salad, which was fabulous.

My mother didn't order a cup of soup, like she does every day, but actually linguine with clams, which she ate almost all of!

Paula kept everybody laughing by telling jokes.

Jeff finally arrived and everyone had a good time visiting with him.

He and my mother have always had a very special relationship and it is obvious how much the two of them like each other.

The restaurant brought her a bowl of ice cream with a candle in it.

At the end of the lunch, the women told us they were treating us to the meal because it was my mother's birthday and because I had brought her down.  It was very sweet of them to do that, and I had to take a picture of the group (minus Jeff, who had to get back to work).

There were hugs all around and I told them that whenever they wanted to include her in their lunch dates, just e-mail me and I'll be happy to bring her down.   Heck, to watch her be so "normal" for a brief time was worth the 3 hour drive.

When we got in the car, I said something about how nice it was that the women had treated us.  "Who treated us? to what?" she asked and then for the rest of the drive, she discussed the trees, the dead grass on the hills, and the barren fields.

That's why I wish I knew more about dementia...how she can turn it on and then lose it so quickly.  But I am still on a high, remembering how happy she was and how much fun she had visiting with her friends. It was nice seeing my mother again.

The Hairdresser

The day started out taking my mother to the beauty shop at Atria for her 10 a.m. appointment.  The beauty shop is not open on Fridays, but Lucy, the beautician, made an exception and came in especially for my mother, so she would look good when I take her to lunch with her friends in San Rafael tomorrow.

The transformation was striking.  She's been looking like the Wicked Witch of the West for weeks now.  Her old self would be appalled at how she looked going to meals at Atria.  But once she got her hair washed and set and her curls brushed out, I loved how happy she looked.  Sadly, it is obvious that she will never be able to do this by herself again.  The beauty shop has moved upstairs and it involves (a) knowing that it's upstairs, (b) finding the elevator, (c) knowing which button to push, and (d) navigating TWO hallways to get to the place.  It was blatantly obvious that my mother was incapable of doing any of those things, so I guess I'll be taking her for hair appointments from now on.  It takes about an hour from start to finish and I read in the shop for awhile, but the chair was uncomfortable, so I moved to the couch outside and that was better.  Now that I know how long it takes, next time I might get something done while she's in the shop.

She can't retain the fact that we are meeting her friends tomorrow, so each time I mention it to her, it's like a fun new surprise all over again which, other than being tedious for me is kind of fun watching her get excited about it.