Wednesday, August 30, 2006

A Poet Reflects on Losing Things

A poem by Elizabeth Bishop,
sent to me by a friend
after my mother shared her anxiety about losing things...

The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother's watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn't hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn't a disaster.

--Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
the art of losing's not too hard to master
though it may look like (Write it!) like disaster.

~ ~ ~ ~ ~ ~ ~ ~ ~

Monday, August 28, 2006

Hints for Coping with LBD

An email arrived with this message:
"I was diagnosed a couple years ago with probable LBD. Any hints for me or my caregiver?

So here are the main things I would advise:

*Remember it is only a tentative diagnosis... some people told they have LBD turn out to have vascular problems (small blood clots that affect the brain) or other forms of dementia rather than LBD.

*Look at the accomplished people who have had LBD (such as Robert McAfee Brown and the publisher of the LA Times) and don't let your self-esteem fall (because you can't remember names or make other mistakes).

*For both you and your caregiver, it's important to accept the illness... to flow with the daily changes and learn about this stage of life, rather than feel resentful about the losses you are experiencing.

*Take precautions to avoid falling. Balance problems are common in LBD. Having dementia is one thing, but breaking a hip and possibly being in a wheelchair is a real inconvenience and has an effect on your overall health.
If I had it to do over, I would have arranged for my mother to have a companion 24/7 or supervision in a group setting sooner. That would have prevented the fall she had in August, 2004. With LBD you get to where you can't remember to use a walker--she left it at the door of her bathroom and fell in the bathroom. Also in the night she will attempt to get out of bed and walk, not remembering that she needs a walker and someone to be at hand.

*Make sure you are taking Exelon and Namenda or some such medicines--they really do halt the decline, as far as my mother and I can tell. And don't be reluctant to take an antidepressant such as Celexa or Remeron. You will need it--my mother struggles with depression.

*Avoid drugs like Restoril, Ativan, Respirdol and Haldol-- all antipsychotics and neuroleptics. These really put my mother into a stupor and can cause irreversible brain damage. They can also cause an anti-neuroleptic reaction (a serious allergic reaction) in LBD patients.
Providing a companion as many hours as possible per day and providing one outing or interesting activity per day are better ways of avoiding the problems for which these drugs are prescribed.

*Be aware of the two biggest signs of LBD:
1) daily fluctuations in your alertness, and
My mother has had LBD for 5-6 years, and at this point she can have one very good, alert, active day--but the next day she will be almost impossible to rouse. She will be dressed and taken to meals but will almost sleep through them. The next day she may be alert again or may have another sleepy day. Sometimes she will have a good morning and be unrousable in the afternoon.

Then there's the occasional agitated day when a dream the night before seems very real and she is reacting to it most of the day, either with anger or fear or grief. I've learned not to report deaths in the family and not to give her bedtime anxiety with statements like "Tomorrow is Easter! I'll be here early to take you to church."

With hallucinations, your caregiver needs to remember just to listen to your reports, commenting with interest, and to avoid contradicting you except when necessary. My mother often reports having seen a child or animal or person that actually was not present, but I don't try to argue her into accepting my version of reality. When she sees people on the street or in a restaurant, she usually recognizes them as family members or friends; I either comment, "Oh, that's interesting" or remind her that her son is in Colorado and we are in California.

As Mae West (I think) said, "Old age--it ain't for sissies!"

Thanks for writing, Chip. Hang in there.

Sunday, August 13, 2006

A Crazy Idea

My brother Bill called to talk about maintenance issues at the Trout Lake cabin, and I moved the conversation to the topic of Mom's care and her desire to get to Colorado.
"She may have dementia, but one thing she always talks about is wanting to get back to Colorado. I can't get any caregiver to go with me, and I can't do it alone, but if you could get a week off in September or some time, maybe we could both take her."
"Hmmm... dying woman's last wish," he responded. "Yeah, maybe I could get some time off. I'll look into it."
"I've thought about driving her, but it would mean sitting for so long in the car and many bathroom stops. I could get her on a plane, but I don't see how to do the change of planes in Phoenix onto one of those small planes that you have to walk up the stairway to get into. That's the only kind that flies into Durango. I could fly her to Denver and get her off the plane there; then we could drive to both Boulder and then down to Telluride..."
"Or fly her to Grand Junction. They have bigger planes in Grand Junction," Bill said. "It would only be a three-hour drive from Grand Junction."
"Oh yeah. That might work," I remembered.
We'll see if anything comes of this, but Bill and I might try to take her to Colorado for one last time.

Saturday, August 12, 2006

At the Lone Tree Cemetery

Under cloudy skies the five children and numerous grandchildren, great-grandchildren, and a few others gathered at Lone Tree Cemetery east of Telluride to bury the ashes of Walter Pera, my mother's cousin. They grew up together in Telluride.
One of Walter's daughters read a beautiful account of his life and personality, and then others spoke of their memories.
Davine Pera read letters received from those who hadn't been able to come, like my uncle Herschel Gustafson and my mother.
I added a few words about how Walter had been her favorite cousin, always generous with his time, teaching her to play tennis, and how much she would have liked to be here today.
Then the whole group went to the Swede-Finn Hall for a luncheon reception, after which some returned to the cemetery for the actual interment of the ashes.
By that time it was raining, so the crowd stood under umbrellas. Each of the children put something in the metal box (made by Walter) that held the urn. To take with him in the afterlife, they put in a screwdriver (something he hated to be without), a coffee-boiling can he had made from an old Hills Bros. coffee can and used on elk hunting trips, a silver dollar, a bullet, a root beer barrell (candy), a few letters, and a Finn flag. His parents were Finnish immigrants, and he always maintained an allegiance to Finland, visiting their village in 1985.
The memorials were very moving under the somber sky with the steep slopes of the U-shaped valley disappearing into the low clouds. Walter lived and worked in these mountains, living up at the Tomboy Mine for one year.
He lived his 92 years courageously and finally was buried next to his older brother, August, who was born in 1907 and died in 1943. August's twin died before his second birthday, and a sister born when he was two years old only lived a day. Finally in 1911 a sister was born who lived to age 89, and then in 1914 Walter was born.
What a hard life their mother, Mary Gustafson Pera, had. Her husband died in 1924 of rheumatoid arthritis after being an invalid for several years. Mary took in laundry and ran the town sauna for a living. Walter took picked up dirty laundry on his sled and returned them when cleaned and ironed.
When the mines closed in Telluride during the Depression, the family moved to Durango. Walter returned to Telluride and by 1943 my grandfather, August Gustafson, hired him at the Western Colorado Power Company. I heard some stories of my grandfather's kindness to Walter and his family.
In April there was a fire in Walter's garage in Durango, where he and his wife Allene were living. They had to move to an apartment, and this upset Walter greatly. He no longer had his shop area to tinker in. He had increasing dementia, possibly LBD, but refused to go into any assisted living. He and Allene often ate doughnuts and lemon meringue pie instead of healthy meals.
During a trip to Oregon to visit his daughter there, he contracted pneumonia and was dying. He knew it and wanted to end his suffering.
"Isn't there something you can give me so I can die?" he asked his daughter, two days before his death.
"No, papa," she said.
"I can't die, dammit!" he cursed.
He also asked for a gun, in true pioneer style, but wasn't given one.
Now he rests in peace, surrounded by his beloved mountains.
I walked around and looked at the other family gravesites, thinking about his long and courageous life, wishing my mother could have been here for the family gathering and shared memories.
Within a few years she too will be resting in peace in Colorado, her ashes buried not in this cemetery but at Trout Lake.

Thursday, August 10, 2006

Driving to Colorado

Today I leave to drive to Colorado for Walter Pera's memorial service.
He died in Oregon, visiting his daughter, and his ashes were taken back to Telluride, where they will be placed in Lone Tree Cemetery with a graveside gathering of family sharing memories
about him.
The big question is whether to take Mom. She would love to go to Telluride and to be present for this event, but I don't have anyone to accompany me and I don't see how I could do it alone.
Actually, it is not a question. There's no way it could be done.
Flying, it would be hard to take her wheelchair, commode, walker and to get her on and off the small planes (there's a stairway passengers have to walk down to get off the planes--she could be strapped into a chair and carried down, but that's not easy, and to get to Durango requires a change of planes in Phoenix).
In a car, she'd be sitting in the heat (with AC) as we drove across the desert. We'd have to get her in and out of restrooms, at least one motel... And in Cortez, we'd have to pick up an oxygen tank.
I think through these things and decide, no, there's no way. Then a few hours later I am thinking through whether it would be possible, how it would be done.
The other problem is that I can't tell her I am going.
She would say, "Take me!" And she would be sad that I can't take her. And it would reawaken her sadness over someone dying--Reynold? Walter?
The result would be leaving her upset, possibly agitated and harder to care for by the staff of her residence. So I can't tell her, but I stop to say goodby to her before leaving.
"Mom, I'm leaving for a few days."
"Where are you going?"
"Uh... San Diego."
"Oh, take me with you."
"I can't. Just John and I are going. But I'll be back in a few days."
"That long?" She is sharp enough to know that's a week.
"Yes, but Connie will be here and Racquel. You'll be fine."
"I just hope I don't have to think any more about Elbert and all the people who have died. That always makes me unhappy."
"Yes, it does, doesn't it. But don't think about that. Connie will take you today to get a manicure and pedicure. And I'll be back soon."
I left to drive across the desert alone, to represent her and our branch of the family at her cousin's memorial service.

Saturday, August 05, 2006

Little Women

I took Mom to see a musical version of Little Women today at the Pantages Theater in Hollywood.
It was a big outing, and she enjoyed it. It was a gamble to get tickets because we never know when she will have a sleepy day and be unrousable for most of the day.
Thank goodness, she had a normal day today and was wide awake and attentive during most of the three-hour performance.
There was a kind of box-like platform near the 30th row of seats, on the side, where the usher rolled her in her wheelchair and brought a chair for me.
"Box seats!" I told her.
She wanted popcorn, but they only sold candy.
Now and then I updated her on the facts of the plot, whispering.
She usually whispered back something like, "He's going to rape her!"
"No," I answered. "That's not in this story."
At the end she commented something about "the story of the Marlboro man, who sits next to me in the dining room."
"Yes," I answered. "Ralph sits next to you. He was the first Marlboro man. He's such a gentleman, always polite."
"He never smoked," she says.
"Right... that's why he lived so long." (The second Marlboro man died long ago of lung cancer.)
I think she knows she is in Hollywood and has seen a fancy show with actors, so she's connecting it to her friend in the Reminiscence Neighborhood, the actor who did the Marlboro commercials in the 1950s.
But now she is off and running with another memory: "He called for me to come because he would die in 45 minutes. I came, and he died in my arms."
"That's Elbert," I say. "You went to see Elbert." I don't correct her details: he didn't die in your arms, and the time frame wasn't exactly 45 minutes.
Was it worth it to take her to this show?
I don't know... she enjoyed it, but her mind went to some unusual places with it.

Wednesday, August 02, 2006

Staph Infection?

I took Mom to the dermatologist for a check up on a small red area below her right breast, where she had a skin cancer removed about four years ago.
It was a routine appointment, and area of the old surgery was fine.
The doctor was worried, however, about the blisters on her neck and chest area, as well as. on her thigh near her crotch.
"How long has she had them?" she asked.
"About a month or more," I said.
"Then it's either a yeast infection or MRSA, methacillin-resistant staphlococcus aureas. I suspect the MRSA because she lives in a residence and these kinds of things get passed around easily from one person to another in those situations. They're very resistant to the usual antibiotics but respond well to Doxycycline."
"Okay, fine," I said, sorry that I hadn't taken much notice of these sores, except urging the caregivers to put Neosporin on them. Actually, they had gotten worse while I was gone.
"The only problem is that Doxycycline, in addition to stomach upset, doesn't work well with Coumadin," she continued. "But if you check her prothrombin time in one week, it should be okay."
"You mean Doxycycline makes her blood tend to clot more or to get thinner?" I asked.
"It makes it thinner, but don't worry about it. We'll just give her two weeks worth of it, and we will monitor her PT times."
Another hazard to watch out for--MRSA. More trips to get her PT times.
There's always a new angle to her care.

Tuesday, August 01, 2006

The Missing Hair-Do

Mom appears to be none the worse for the wear during my almost three-week absence, but I found out that she has not had her hair washed or set since July 12, when she had a perm.
"Don't get your hair done Monday," I said when I left. "You have to skip a week because of your fresh perm."
Mom remembered this and refused to go down to the hair stylist in the building on Monday for her usual appointment.
But the hair stylist interpreted her refusal as an indication that she didn't plan to get her weekly hairdo's any longer. She removed her name from the appointment list, and for the next two Mondays, Mom still did not get a shampoo and set.
When I found out, I spoke with Elisa, the stylist.
"She said no more," Elisa said, righteously.
"But she's on the third floor!" I said. "People on the third floor have dementia. You can't take their word for it and remove them from your list. Don't change anything without talking with me."
"I called your home, but you didn't answer," she said.
Funny that there was no message on my machine... but I again told her, "No changes unless you first speak with me."
Then Elisa said she could not give Mom a shampoo and set today. Since she only comes two days per week, that meant we had to go elsewhere to get it done.
I took Mom out in her wheelchair and we walked until we found a shop that would take walk-in business.
My 9 am visit ended up taking until 5 pm... I also had to get her a manicure because her nails were rough, and she was scratching herself on her chest. Then we had to buy Depends, etc.