Alzheimer's

May 11, 2009

Happy Confederate Memorial Day!

Confederate memorial day This is a photo I took on Saturday of South Carolina's State House. That's Lily in the front left. I don't know who the Confederate re-enactors are, but I'm sure they were hot. They were also extremely serious people, like the Beefeater guards you can't get to acknowledge you.

Not that Lily was one to find out. I could hardly get her to stand in the same town with them to get this photo.

"Who are those people?" she asked.

"Why do you think I'd know?" I answered. I have a lot of crazy friends but most keep to themselves and dress normally. "Just stand in front of the State House so I can get your picture." I practically had to haul her over there and sit on her just to get this picture. This was as close as she would get to them.

"They look like rapists," she said.

"They're not. They're just men with a love of history and too much time on their hands," I said.

"Why are they doing that?"

"Smile, honey, and we can get this over with."

We had a wonderful confluence (is that the word) of things this past weekend. Lily had a school project where she has to take pictures of various historic places (about 25 in all) downtown. She gets extra credit if she's in the photo.

And I got a brand new Nikon D60 for my birthday and Mother's Day. Yahoo! As soon as the battery charged, we were off, with Paul driving and Lily and me hopping out in traffic to take the photos.

Today I found out from a friend who works in state government that today is Confederate Memorial Day and she has the day off. So that's why there were sweaty re-enactors standing in front of the Confederate Memorial. (Though I'm beginning to think that a secession might be in order with the Obama administration doing all it can to dismantle what made America great. But that's another topic.)

Gervais St Here's probably my favorite picture of the day -- Lily standing by the Gervais Street bridge. Sherman's troops sat on the other side of the river and shelled Columbia from there before crossing the river to burn the city.

I remember that Confederate Memorial Day was something my mother observed, but I don't remember how. Maybe just by remembering. She knew her grandfather, who was in Virginia when the war ended and had to walk home to South Carolina. She told me once about how as children she and her siblings would pretend to listen to their grandfather tell his stories, would say "yes sir" and nod their heads and not listen to a word. She said she regretted that she didn't pay more attention, that she didn't remember more. I guess when Confederate Memorial Day rolled around she remembered all that she could remember. And more. Now she can't remember who I am.

For those of us who can still remember, Happy Confederate Memorial Day.

November 24, 2008

Playing God

I knew it was bad when I saw Dipstick, my mother's cat that I took when she went into Alzheimer's care, dragging his leg and refusing to eat. His breathing was rapid and labored and his feet were cold. I made him as comfortable as I could until I could take him to the vet.

The diagnosis: saddle thrombosis. Dipstick threw a blood clot (he no doubt had heart disease but we didn't know that) that lodged in the branch of his arteries that fed his hind legs. Without blood flow, one leg was paralyzed and both were cold to the touch. The vet couldn't pick up a pulse in either hind leg. Dipstick purred while I petted him, but he was clearly a hurting kitty.

I've already been through this with another cat. That cat, Woody, suddenly started screaming in the early morning hours. His legs were paralyzed and he dragged himself around in excrutiating pain. I thought he had fallen from the hay loft and broken his back, or that a horse had kicked him. I took him to the vet and they opened their office early for me. I was shocked at the diagnosis of saddle thrombosis, and with Woody, I told them to try to dissolve the clot.

I should have listened more closely. Even if they did dissolve the clot, Woody would never regain the use of his legs. After a day of Woody being hooked up to IVs transporting every clot dissolver known to man, I got a phone call that they couldn't save him. He was getting much worse. I went to the vet's office to see my beautiful Woody panting, eyes glazed with medication and seeming to suffer. The vet euthanized him immediately, which was probably several hours after it should have happened. 

Dipstick didn't scream with pain like Woody did, but he was clearly hurting. The options were the same as with Woody, but this time, I decided not to try to save a cat that was suffering and would continue to suffer. I hate playing God.

The vet said it was possible that the clot-dissolving drugs would work, but that he had only been able to save one cat with them in his whole career. And that cat had developed the same problem two months later and had to be euthanized.

I said goodbye to Dipstick and petted him while they tried to sedate him before euthanasia. His blood flow was so poor that the sedation didn't work. Though I am usually with my pets when I have them euthanized, I couldn't do it this morning. Something about Dipstick being my mother's cat made it extra hard.

Dipstick got his name from Lily when she was quite young and had just seen 102 Dalmations. There was a puppy with that name who also had a black tail and a mainly white body in the movie, just like my mother's cat, Dipstick. Dipstick was a good companion for my mother when she was in the early stages of Alzheimer's. He went where she went and kept her company. She loved him. Now she doesn't remember either of us.

I wish I could have done more for him than provide a merciful death.

June 19, 2008

I Miss My Mother

My mother has had Alzheimer's for ten years. For ten years, I haven't been able to call her and have a sensible conversation. For ten years, she's suffered the confusion of not knowing who she is, where she is or whether she is safe or not, and there's very little we can do for her other than tell her lies to comfort her, which she'll forget in an instant anyway. It's a far worse disease than merely forgetting. I had no idea.

Since she's been "gone" so long, you'd think I was used to it. But I still find myself thinking, "I'll call Mama and tell her what happened. That will make her laugh (or she'll come to my defense, depending on the situation)." Or, "I'll call Mama and ask her how to cook this (or handle that)."

But I can't call Mama. She's still among the breathing and sometimes among the laughing and talking, but those phone calls are gone, along with her memory. It's been ten years. You'd think I wouldn't still have the impulse to call her, and then have to remember that's not a possibility.

I have a friend whose mother died when my friend was a pre-teen. Her growing up was hard, but she says now that she's grateful that she's not having to deal with an aging mother. Though that sounds cold, there is some truth to it. And elderly parent can be a blessing and/or a burden. Since my friend had no choice about losing her mother when she needed her most, she may as well have reconciled that with something positive.

I'm beginning to realize that when my mother is really gone, and has been gone for decades, I'll still be seconds away from picking up the phone to call her. It's not quite as good as the real thing, but at those times I can summon up something from my memory about her and visit with that. When she could still answer the phone, I believe I called her up enough to almost be able to predict what she would say. No, that's not true. Sometimes the call wasn't about the question, but about the loving presence on the other end of the phone.

People who love a person with Alzheimer's are said to have "frozen grief." Mama is gone. But she's still here. So my grief is frozen somewhere, stuck between loss and not-yet-lost. It would be a mercy if she were released from this terrible disease, sent to heaven where her wits and her own mother wait. Could I, would I, miss her more if she was really gone? Would knowing that she's free but no longer here be worse than seeing her captive and confused but within my touch?

A counselor once told me that grief is a blessing because at least you have something to grieve -- something good that was lost.

That's my mother, one foot planted in the here and one in the hereafter, straddling the abyss of Alzheimer's. Still here, but surely lost.



May 23, 2008

Mama is 96 Today

Change_of_address_pictureHere's a photo of my parents before Mama got Alzheimer's and before my father turned into a skinny but determined old fellow. Today is Mama's 96th birthday. My father had it all planned out. I would drive up there, we would load her into my car and take her on a joy ride. Since she's bedridden, can't walk and they need to use an automatic lift of some sort to move her from bed to chair and back, this whole fantasy required a good bit of imagination.

He sort of sucked me into the whole idea. Poor Mama stuck in a nursing home. For her 96th birthday, we'll take her out for a drive. Never mind he can't stand upright without falling over and is a hazard to take places. Never mind that Mama doesn't know who we are or where she is most of the time. Never mind that when she was mobile and could go places, she so objected to having to go back to the Alzheimer's unit that we had to put lorazepam gel on her wrists to get her calmed down enough to return.

Saintly Brother pointed out the many ways I had lost my mind with this scheme. That's what Saintly Brothers are for. I am gracefully bowing out but not engaging my father in discussion about the why.

I may not even see her on her birthday, which makes me sad. Then again, I can see her on another day and we can declare THAT day her birthday, and pick any number we choose. We can celebrate her 50th birthday or whatever sounds good to her, since she doesn't know what year it is anyway. I doubt she'd believe me if I told her she was 96. I'm sure she wouldn't. I hardly believe it myself.

Dscn1184copy Here's a photo of us celebrating our birthdays in 2005. That's my non-teenage daughter, Lily, in the middle.

April 14, 2008

How to Take An Old Person to Lunch

My father likes for me to "come get him out of there" and take him to lunch. The more limited he becomes, the more difficult this is. Here's a list of suggestions to myself for the next outing:

  1. Bring a patient grandchild along. Bribery can inspire patience. Bribery cannot inspire cheerfulness but cheerfulness can be faked. Demand it.
  2. Don't have anything scheduled for the rest of the day.
  3. If you plan to pick your old person up at 11:00 a.m. for lunch, be aware that they will be sitting there waiting for you at 8:00 a.m. and will be mad when you show up on time that you weren't there earlier. Getting there earlier won't help, unless you get there at 7:59 a.m.
  4. Make sure you have room in the car for the walker.
  5. BRING AN EXTRA OXYGEN TANK NO MATTER WHAT THEY TELL YOU.
  6. Ask often if they need to go to the bathroom. Those heart meds bring frequent and urgent needs and are  most likely to occur when there is no bathroom. Like a toddler, they will resist going to the bathroom when the needs isn't urgent (yet) because the effort to get to the bathroom and tend to their business requires so very much work that it's physically exhausting. However, so is cleaning the urine smell out of your car. My father wants to bring his portable urinal with him, but he's not a good aim. This is TMI for you -- and for me. Believe me. We are deeply into TMI in the elimination department. It must be just awful.
  7. The average maitre d' will try to stick you into the back because elderly people with freshly spotted pants and oxygen tanks do not look good in the front of the restaurant. This is their problem. Insist that you be seated in a convenient, quiet table with padded seats that isn't far from the entrance or the bathroom.
  8. Try to pick a place that isn't loud. Pick a place with incredible desserts because the sweet taste buds are the last to go.
  9. Think in advance of subjects to talk about so you'll have topics other than elimination.
  10. Bring a (waterproof) pillow in case the chairs are hard. When an old man has lost 50 lbs., he's got no butt or back padding. I may get a pillow just for this purpose. Maybe an outdoor cushion with a back and bottom in it. Just hope it doesn't slip and slide and throw him on the floor!
  11. If the meal they choose comes with pasta, ask for bowties or other shapes that are easier to handle than long noodles that need twirling.
  12. Order something extremely healthy for yourself. You might get old and you want to be healthy and in good condition. If you need reminding, look across the table.
  13. Expect to hear that the food doesn't taste right. It probably doesn't because elderly taste buds are shot. Be sympathetic and not argumentative. Offer to get something else. Some foods do still taste good, though it seems to be a random thing and I can't tell you what they are. It's not a fun outing for somebody to find out that one more thing is wrong with them.
  14. Bring Shout or some other brand of wipes to help clean up afterwards, if they don't mind. Nobody likes to wear their lunch but sometimes it's better not to acknowledge it.
  15. Don't forget to stop at the bathroom before leaving.
  16. Leave a good tip.
  17. Ask if you can run errands on the way home.

Usually we get lousy service from people who want to stick us in the back and find us high maintenance. Yesterday Lily and I took my father to the Macaroni Grill. The maitre d' immediately found us a table where my father didn't have to walk far (without my requesting it) and brought extra napkins for my father to sit on so the chair would be softer. The waiter wanted to chat with my father about his life, since they'd both graduated from the same school. It was too loud, but my father was okay after taking his hearing aids out. The loaf of bread (loaves I should say) was a big hit. Great service from kind, thinking people. And not one word about elimination.

April 12, 2008

Women's Color Knowledge is the Last to Go

My father was visiting with my mother, who has Alzheimer's, and she was ignoring him, which is sometimes a good idea. Or perhaps it was one of her non-responsive days. Either way, he wasn't getting a thing out of her, so he was talking to her about things he hoped she would find interesting. He noticed a basket of silk flowers in the day room where they were sitting and, not expecting an answer, he said, "Aren't those pretty blue flowers?"

My mother quickly responded, "They're purple."

She didn't say another thing that day.

April 05, 2008

My Mother's Smile

My mother hasn't known me for months. Yesterday, when I went to the retirement community to pick up my father to take him to the very sad funeral (yesterday's post), I stopped by to see my mother.

When I walked into the room she broke into a smile all over and announced, "That's my daughter!" We talked, more or less, and she beamed with delight the whole time. (Usually she just naps and looks at me with glazed eyes.) I asked her how she was doing. She said, "I'm doing well because you're doing well."

And when the attendant was fixing the lift machine to get my mother from the bed to the Gerry Chair (geriatric chair), my mother looked at me and said, "Now I'm going to show you some tricks."

I couldn't believe it.

When we were saying goodbye she said, "I love you." And I said the same.

What a gift! To have her present and alert for just a few minutes. And though everything has changed, none of the big things have. I can't wait to get all of her back in heaven.

If your mother knows you, go give her a hug. Then hug her again. Keep hugging her until she tells you to go away. Then don't go.

March 13, 2008

Terry Pratchett Diagnosed with Alzheimer's

Terry_pratchett Terry Pratchett, one of Lily's and my favorite authors, has been diagnosed with early-onset Alzheimer's. I'm so sad. You can read the BBC story here. By the way, he's donated $1 million for Alzheimer's research. He's still writing but has quit driving. He said, "Personally, I'd eat the arse out of a dead mole if it offered a fighting chance.

"I am, along with many others, scrabbling to stay ahead long enough to be there when the cure comes along.

"Say it will be soon - there's nearly as many of us as there are cancer sufferers, and it looks as if the number of people with dementia will double within a generation."

In a separate, older story, I loved his response to J. K. Rowling's statement that she didn't know Harry Potter was a fantasy while she was writing it. Pratchett said:

"I would have thought that the wizards, witches, trolls, unicorns, hidden worlds, jumping chocolate frogs, owl mail, magic food, ghosts, broomsticks and spells would have given her a clue?"

I don't know whether people will be reading his work in 100 years, but he's certainly given a lot of pleasure and laughter to people during his lifetime. We loved the books about the young witch Tiffany Aching, and the other witches, too. We just finished Maskerade and are now listening to Wyrd Sisters.

I hope they find a cure for Alzheimer's. It's too late for my mother. I'm so sorry to hear about Pratchett. What a fine and wonderful mind.

March 11, 2008

Heart Failure, Alzheimer's and Acne

I feel like getting under the bed. This morning I took my father to his doctor who was amazed that my father has rebounded and stabilized -- not currently in heart failure. Of course my father was surprised to hear that he'd ever been in heart failure. I think he thought heart failure equals a heart attack. The doctor made the remark that attitude and will have a lot to do with survival for old people and people with cancer. My father has even gained five pounds and his bloodwork, etc. was great. So that was good, though my father complained that he's too tired to work out and that he didn't think what he was doing for strength training was working.

The last time I went to visit my father I found him doing laps with his walker in the parking lot. He was about to keel over, but he was doing laps.

My father complained to the doctor that he couldn't walk very far anymore. The doctor said, "You should be grateful for whatever distance you can walk." That doesn't compute with my father. The doctor said, "You look great. There's no change."

My father said, "That's terrible. I want to get better." He doesn't know that the doctor predicted over a year ago that my father wouldn't live until 7/07. He still believes he can get better and that the power is in his hands, if only he would work out more. I wish I had those genes, or those delusions.

My father insisted that we go to the hospice meeting early so I could practice being early (enough already!). We sat in the car and drank Cokes and talked. The meeting turned out to be very important. Those hospice people (a Lutheran group) are really wonderful. My father, the activist, had decided that since my mother's teeth hurt (they are falling apart -- I understand that sometimes happens at her age -- I mean, you go there one day and the tooth that was there the day before has broken off. It's quite shocking.) My mother is on painkillers for it as the goal right now is for her to be at peace and not hurting. Anyway, my father has decided that my mother needs all kinds of dental work. He's been agitating about it so much that he found a dentist to come in to do it. Hospice informed us of the risks and probable lack of benefits. They brought in their doctor to talk to us about it. Saintly Brother and I put the brakes on this scheduled tooth pulling (Non-Saintly Brother wasn't there, though I saw him in traffic later). We'll meet with the dentist and the social worker next week to see if Mama is (1) in pain that needs different treatment and (2) what on earth is the plan here?

Then I had to rush to take Lily to the dermatologist. For acne.

Whiplash here in the sandwich generation. But all are getting good care and sometimes that's the best you could possibly wish for.

February 20, 2008

How Many Places Should I Set for Dinner?

I don't often write about my mother because, though she is still here, Alzheimer's took her from us years ago. Which is not to say that somewhere in there isn't a bit of my mother left. I can see her when she smiles, or squeezes my hand, or says some automatic phrase even though she might not remember who I am.

My mother was raised on a farm in Kershaw County, S.C., during the Depression. She never learned to swim or ride a bike, but she could ring a chicken's neck one-handed (fortunately I never saw this) and cook, can or preserve any food you could grow. She skipped a grade in school but she wasn't able to go to college. She was unfailingly kind and you'd have to get her in a corner to get her to say anything bad about anyone, even if they deserved it.

She never got a traffic ticket, and in contrast to my father, didn't do crazy, reckless things. It really bothered her when he did. She was a worrier. He gave her a lot to worry about. (By the way, she never once signed a release form for my riding lessons. That left me to do a lot of dancing around and somehow the instructors let me keep riding.)

One day when we were at Holden Beach Non-Saintly Brother, who was an adult living with them, brought a Laser sailboat, which is one of those small sailboats where you get wet. My father hadn't sailed since WWII and Non-Saintly Brother wanted to take him out for a sail. My father wouldn't do it.

So, when no one was looking, my father snuck off in the sailboat. (He hadn't wanted to go with Non-Saintly Brother because he didn't want anyone to tell him what to do.) He sailed off into the ocean. I don't even think he had a life jacket. He got pretty far out and while we watched, capsized. He tried and tried to right the boat. But in the decades since he'd sailed in WWII and that day, a new kind of fastener had been developed for the ropes, and my father didn't know how to get it un-done. The sail stayed taut so that every time my father stood on the rudder to right the boat, the sail countered by scooping up half the Atlantic Ocean. Finally, he gave up. We saw him sitting on the hull of the boat, floating in the ocean. I don't have a photo, but imagine this one. Without the rescue boat. In deep water, a mere speck in the distance. The summer that the "Jaws" movie came out.
Capsized_boat
So now it was time for Non-Saintly Brother and my then-boyfriend, who was also a sailor, to swim out through all kinds of imaginary great white sharks to save my father.

My boyfriend was scared off by the little fishes jumping around him. "I could only figure that something was after them, and I was afraid it would come after me." (Note: Old boyfriend is now well-known environmentalist.) So he swam back. Non-Saintly Brother continued his swim out into the ocean.

It was lunchtime. My mother had cooked everything and was setting the table. My father was pretty far out. Non-Saintly Brother was not an athlete, yet he was swimming farther into the ocean. There were no lifeguards on anything on this beach and not many people around. It was a tense moment.

Mama turned to me and said, "How many places do you think I need to set for dinner?"

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Writer Interrupted