Wednesday, March 29, 2006

The Anthropology of Dying

My grandmother has been in declining health for the last few years. She suffers from vascular dementia, among other age and smoking-related problems.

Recently, she fell and broke her hip. She had a partial hip replacement operation and blessedly came through it in good physical shape (for her age and condition).

Her mental shape? Not so good. Memory problems are not new territory for her, but she's been very confused ever since the operation. Confused enough that every morning, she tries to get out of bed and falls because she can't remember that she broke her hip.

The painful conversation about where she is and why she can't go home is repeated several times a day. Last week, she moved from the hospital to a rehab facility, which hasn't helped her confusion.

When I visit my grandmother, I don't know how to talk to her. She pleads again and again to go home, and it breaks my heart to deny her over and over again. My grandmother has had episodes of acute dementia before, but never for this long, and doctors tell the family that she is unlikely to recover mentally or physically to level she was at before the fall.

The situation is difficult for everyone in my family. There seem to be no good answers here.

Human cultures tend to develop rituals for difficult times in life. In most parts of the world, funerals and mourning behavior are well understood, even if the rules are seldom written down.

We have rules for death. We have sytems for dealing with it. Wills, executors, burials, afterlives. We don't seem to have rules for the long, slow, decline that more and more often precedes death. "Modern medicine" has kept my grandmother alive for years, perhaps decades, longer than she would have lived a centruy ago. Well and good. But medicine offers no rules on how to deal with a beloved relative who is less and less the person that she was.

Forgive me, medicine does offer ONE rule- "Pay the bills. Right away." Not very comforting.

How do you treat an aging relative whose decline reaches a point where the label "second childhood" is not strong enough? When the family matriarch crosses the line from being "not her old self" to being not quite a full person anymore?

Ours is the first generation when geriatric medicine has made this set of problems widespread. It is now easy for us to help along an aging heart, but we are almost powerless to halt the decay of an aging brain.

Mixing-bowl, libertine America is generally weak on cultural rituals. We are too mixed-up, too scattered, and too focused on the new to remember the traditional, at least until we belatedly discover that we need tradition to lean on.

Maybe this is a situation where that weakness of tradition can become a strength. Before now, no culture in the world has needed to find ways to deal with geriatric dementia on a large scale.

I can reasonably expect (okay, hope) that people scattered all over the U.S. and Canada will read this blog, plus a few on on other continents. Have any of you had similar experiences with an older relative or friend? Have you found anything that helps? I'm collecting all idea, no matter how odd or person-specific.

P.S.- I'm not saying that there are NO resources out there to help people cope with this sort of problem, but I still think that long-term mental decline is not quite the same problem as death. Some resources I've found helpful before are below; will add to these as I find more:

Hospice Net- http://www.hospicenet.org/
Elisabeth Kubler Ross- http://www.elisabethkublerross.com/

Bill Moyers: Dying On Our Own Terms- http://www.pbs.org/wnet/onourownterms/

4 Comments:

Blogger wolfie said...

Well that brought back some serious memories. My grandmother's dementia occurred so fast. Seems to have been about 3 or 4 months when we went from lunches out and confusing me with my fav aunt once in a while to those midnight phone calls asking me for help because she wanted to go home. Not only was I pretty much the only family member able/willing to help, I was the only one she trusted. 2 hours one night walking around her house over and over because she was convinced her sister had remodeled while she was out and she had hidden the second floor. I went over one night and found her speaking in tongues. We think she had a mini stroke, but at that point there wasn't much to be done. Don't think I'm being flippant here (I'm actually crying remembering it all and what a wonderful lady she was), but that's how I dealt with it. With humor. For every painful heartbreaking step she took downhill I would find some funny special memory to share with my family and friends when I came home. Or I'd call someone and cry on their shoulder for a while. Thank god for free long distance that year. I cried a lot. It was probably about 7 or 8 months of pretty much total senility before we had to put her into a nursing care facility simply because her physical condition declined to the point where she needed more care than I could handle. Luckily when she asked when she could come home from there if we all gave the same answer 'When you get well' or 'When your doctor says you're not sick anymore' she was satisfied with that.
After she died and we were cleaning out her things we found peppermint patties stashed all over that house. I opened up the medicine cabinet and a dozen fell out on me. She loved those things and she always wanted them but I don't think she ever ate them. But she hid them well in those last few months. In the vcr (still wrapped, just tucked away), on the turntable on the stereo, in the butter dish in the fridge, in a camera case. We aren't sure, but we think she did it on purpose so we (the family) could laugh about it when we needed the smile.
I typed a lot for my basic strategy of humor and family. I'mma hush now cause this is a whole lot longer than I intended.

9:57 PM  
Blogger Wurm42 said...

**Hugs Wolfie**

Thank you for your story. I know talking about this is hard. Just remember, "shared pain is lessened, shared joy is increased."

I can sympathize about your grandmother mixing you up with your aunt. In the past, when my grandmother had a dementia episode, she often got lost in time- she was coherent but thought it was the 1940s or the 1960s. I look just like my father; she often mixes me up with him and there have been times when I was the only family member she recognized (if thinking I was my father 30 years ago counts as 'recognizing').

Humor is important. I wish I was better at it under these circumstances.

11:30 PM  
Blogger neophyte said...

{{{Wurm}}} I remember when my grandmother said, "I'm an adult. I've made my own decisions since I stopped being a child. And now everybody is making my decisions for me!"

I also remember my grandfather's senility. Driving 65 mph down the highway, he became convinced that we were kidnapping him and he kept trying to get out of the car.

He would sometimes seem to recover and have wonderful conversations with his wife. She would beam, happy to have him back.... but then he'd suddenly ask,"So how is your husband these days?" meaning he didn't recognize Grandma at all.

I think the illnesses that come with old age are cruel. And I'm so sorry that you are having to go through this. It is a terrible feeling seeing someone you love stop being themselves, someone who was so strong becoming so helpless.

For me, the way to deal with it is to pray. I ask God for help. I ask him for hope. I ask him for strength and patience and endurance. And mercy.

*smooch* Hang in there, Wurm.

10:19 AM  
Blogger Trillian DBB said...

My grandmother has Alzheimer’s. I remember her being tough as nails and sharp as a tack. She started to get a little forgetful and my aunt was concerned that she would go off on one of her daily walks and forget where she lived. She had always said that when the time came that she couldn’t live on her own anymore, she wanted to live at St. Jo’s where her mother had been. They did as she had asked, but as soon as she moved in, her memory loss got a lot worse. When we’d visit she’d start crying and ask to go home. I had never seen her cry before and it rather frightened me. St. Jo’s wasn’t really equipped to deal with Alzheimer’s, and no one monitored whether she was remembering to eat or not. She lost about 15 pounds, and she had only been about 100 lbs to begin with. Eventually they put her it a place that has a special memory loss facility. She thinks that she’s away at some kind of boarding school and the activities they do are her job, like a work-study thing. She’s happier, but she still wants to go “home”. She has no idea who any of us are anymore. I haven’t dealt with it very well, I’ve kinda been avoiding visiting her.

8:08 PM  

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