May 5, 2010

"It started with five words — 'I want to go home' — even though this is her home."

"It's a cruel disease."

"You have to stop thinking logically, because the people you’re looking for are no longer capable of logic."


mRed said...

My mother constantly wanted to "go home". Each day at around 4 PM she would sit by the door waiting for "mother and father" to pick her up to go home for dinner. She would at first be elated because she had so much to tell them then sad because they had forgotten her and then dispondent as she became confused. She thought of herself as being 14 years old. I was told to force reality on her, but I found that each time she was told that her husband was dead it was if she was hearing it for the first time. Once reality was dropped she and I had hours of fun talking about her homework, friends and neighbors now long dead to us, but not to her.

Ann Althouse said...

I deleted a double comment just as the writer of the comment was deleting it, and we chose different doubles to delete, leaving nothing. A metaphor?

Here's the post (and maybe the commenter will repost as I'm posting this, producing a new double):

mRed wrote:

My mother constantly wanted to "go home". Each day at around 4 PM she would sit by the door waiting for "mother and father" to pick her up to go home for dinner. She would at first be elated because she had so much to tell them then sad because they had forgotten her and then dispondent as she became confused. She thought of herself as being 14 years old. I was told to force reality on her, but I found that each time she was told that her husband was dead it was if she was hearing it for the first time. Once reality was dropped she and I had hours of fun talking about her homework, friends and neighbors now long dead to us, but not to her.

Ann Althouse said...

Oh! Ha ha.

See? I knew that would happen.

Ann Althouse said...

Hi, mRed. Thanks for commenting.

mRed said...

That was funny! Did we go to different schools together?

edutcher said...

Similar to my mother-in-law. She thought our house was 'the summer home' (we couldn't figure out where that came from). Presumably, home is going to be the place where they were happiest when they were young.

If it ever happens to me (moderately likely), home is probably going to be my Aunt Claribel's house in North Jersey. I probably ought to tell The Blonde (not joking, it just occurred to me).

Mick said...

Pogo said...

They are communicating with behavior what is no longer possible with words.

Many such patients are fearful and they do not know why, they do not recognize that it arises directly from a decaying brain (they 'cannot problem-solve').

So seeking home can mean many things, ("I'm afraid, I'm lost"), but a search for safety, for the familiar, is chief among them.

exhelodrvr1 said...

"She thought of herself as being 14 years old. "

Did that stay fairly consistent, or did that change as the disease progressed?

As my whimsy leads me.. said...
This comment has been removed by the author.
As my whimsy leads me.. said...

My father had Lewy body dementia along with his Parkinson's disease. He would have a phantom guest sitting in his room most of the time. Usually it was his long dead brother or friend, but sometimes he would say, "What's that fellow over there want?" Sometimes he would see kids running through the house or think my mother was having a party. He really did see them, and you can't argue. Usually the spare people just kept him company. Occasionally they made him upset. But he could tell you what the Cincinnati Reds or UK Wildcats had done last week, and remember that I had a pimple 2 weeks ago.

Sometimes that certainty about strangers in the house makes people with Lewy body dementia think that their spouse is cheating on them. Talk about caregiver stress--suspecting the person who has been patiently caring for them for years in spite of all the frustrations.


mRed said...


It was pretty constant, but wavered some, especially towards the end. My mother lived far longer than any doctor predicted. In fact she out lived two. No disrespect to doctors (my father was one and my mother a highly skilled surgical nurse), but they had no clue what to do. Against their advice we kept her in her home ans as I said before, we stopped reinforcing reality which lessened the "sundowner" effect (around 4 PM each day), but we did have to put bolts out of her reach on every door. Also, every day somebody walked 2 miles with her. Even at the age of 90 she was hard to keep up with.

exhelodrvr1 said...

Thanks, mRed

Julie C said...

This is so sad.

My mom always talks about walking to her home in Chicago to see her parents (we live in California). If she wasn't in a locked place, with alarms on the doors, I have no doubt that she would leave and just walk without stopping until she passed out.

The sundown affect mRed mentions is really awful. When she lived at home with my Dad he tried to cover it up from everyone but that became harder to do. She would be sweet and nice, and then turn mean and really horrible later in the day. When she physically attacked my Dad (who was very ill himself) we had to move her out of the home.

My experience has been that she is gradually progressing backwards. Two years ago she would ask me why I wasn't coming home (as though I was a teen still living there) and now she thinks she and I are friends - contemporaries - and that we both have young children.

It is weird to me why some of the caretakers at her assisted living place try to insist she recognize me as her daughter. It just upsets and confuses her. We did not tell her that her husband, my dad, died last year. There is no point, because from her perspective, it would be a completely terrifying tragedy (she's now a young widow with four young kids to raise alone!), rather than a natural event that occurs when you are in your 80s.

Dust Bunny Queen said...

Not Alzheimer's but similar and baffling.

My mother had a very severe brain injury from an auto accident and was in a coma for about 6 months. When she gradually came out of the coma she didn't recognize any of us and thought she was a on a big ship (probably from the vertigo that she eventually got over).

When asked do you know this man, my father/her husband she had no clue who that man was. She insisted that her husband worked as a boat captain on the Eire Canal and that it was about 1874 and that she lived in New York State and that he would be coming soon to get her. None of which was anywhere in the family history so it couldn't have been a remembered story from her childhood. No idea of where she got these idea

She kept trying to get away and get off of the ship so she could go home. Eventually, she began to recognize us as she physically was more able to get around/ambulate. Gradually she forgot her other phantom life.

The brain is very strange.

Simon Kenton said...

I've been on a couple searches for the demented. There's a particular poignancy in being on a local department - it is your neighbor's children who commit suicide, and sometimes we don't go into the house because we knew them. Let the sheriff handle it unless he asks specifically. It is your neighbors and their parents whose minds seep away. It's a difficult search; as the article points out the general rules you use for missing kids or adults don't work. We've had some luck - it's really only luck - with patterning searches on analogies to the behavior of wounded animals. The aged demented tend to go downhill, and they hide from you, so you look in the wells of trees and windows, behind screening rocks or brush. It's a mountainous district and you don't want to panic them; they might flee into or off the edge of things.

Sometimes it's a parent or spouse from somebody on the department. Sometimes it's yours. Being human seems a lot more entangling in late middle age than it did in one's 20s.

As my whimsy leads me.. said...

Simon Kenton, are you related to Simon Kenton, the frontiersman and friend of Daniel Boone? If so, you and I are distant cousins.


As my whimsy leads me.. said...

My husband's aunt, who was a smart and accomplished woman, developed dementia in her 70s.
In the early stages, she was a bit paranoid, and stopped coming to family functions, or would come and take off really early. Nobody took that as very unusual. They would either laugh or get annoyed with her. Later, she would wander a path around town, especially pestering her lawyer. She drove far longer than she should have, and would get lost, but eventually find her way home. She had never married, and my husband's family did not take charge. When they finally intervened, they found nothing but old McDonald's coffee cups and cole slaw containers in her refrigerator, and her gas oven was full of newspapers. It was a good thing she didn't cook. She had gone from plump to skin and bones.


Deborah said...

It's interesting about the hallucinations. My mother was convinced there was an old woman and a man in her room. The man sat on her night table. He often urinated on himself. Sometimes she saw a young girl. Mom expressed surprise at how these people would just disappear when the lights were turned on. There was one poignant moment at the doctor's office when she described these visitors and asked if they were going to hurt her. "No, honey" the doctor said, "they won't hurt you." Then Mom told me that she finally gotit through her head that they weren't real. "But why," she asked, "do they only come to my house?"

She had many such hallucinations, and often thought she had gone to another city and had been stranded without any money. Other times she would just stand in the hallway of her nursing home and call for someone. She thought her long-dead mother had come to the nursing home looking for her.

It's a horrible, cruel, heartbreaking disease. My mother's suffering still haunts me and I will go to my grave with many, many regrets.

kynefski said...

There was an interesting piece on Radio Lab awhile back about a German nursing home that hit upon the idea of placing a bus stop in front of the building. While clients waited for the non-existent bus, they forgot that they needed to leave.

I've long experience with neurodegeneration. My mother endured progressive supranuclear palsy, and my father-in-law and sister-in-law were Phds. I've come to conclude that the most valuable skill one could possess in dealing with dementia would be experience with improvisational theatre. We will never be able to bring our beloved back to our world, but we may be able to bring some guidance to theirs.

I remember bringing my Mom to a shopping mall, and noticing that she had trouble walking across patterned flooring. And I realized, my God, she's tripping.

raf said...

I had an aunt who at times apparently thought I was her brother. I learned a few things about the previous generation that otherwise I never would have known. Those conversations were poignant, but very interesting.

Allison said...

To Julie's comment:

my grandmother had alzheimer's for several years, and eventually became so belligerent in the evenings that she had to be put in a home. But finding such a home, and getting anyone to help that happen was very painful.

After she left home, her husband, my grandfather, stopped taking his heart medication, and died within a few months (he'd had a heart condition since a heart attack 20 years earlier.) They didn't bring my grandmother to the funeral. Afterward, they visited her, and talked about the funeral in front of her, thinking that she didn't understand. They also mentioned they were going on a trip for a weekend, I think. She died in her sleep two days later.

The last thing she said to me, a year earlier, was "my mind is like a town." I thought that was quite a clear metaphor--trying to keep track of all the conversations, the movements, the people, the traffice lights going on in one's mind all at once. And then she went back into her shadow, after that sentence. She would wander off, but she would also hide things--loaves of bread, keys, etc. The hiding? hoarding? No one quite knew what that was.

My other grandmother is suffering from it now. She's from Poland, and was in a work camp in WWII. Her family is not Jewish, but she was in Warsaw when the ghetto was there. I am constantly astonished at the ignorance and idiocy of her doctors and nurses who say things to her and in front of her without at all considering that she might be back in that world. After she'd had some paranoid behavior leading to a cop having her held in psych custody, the psych doctors tried to *I kid you not* force her bodily into the showers at the hospital, while she attacked them, and then claimed that her attack justified her being restrained. A dentist told my mother in front of her that she needed all of her teeth pulled. The list goes on of equivalent stories.

Julie C said...

Allison - your experiences sound sadly familiar to me. After my mom attacked my dad the police were called and they took her to a county psych ward. It was very unreal -police taking an 80 year old woman with dementia to a psychiatric hospital ... And it was devastating to my father. When we moved my mother, my father, a former Marine who fought in WW2, cried like a baby and begged me to bring her home. It was awful.

We're lucky that my parents were savers - her care at a very nice assisted living facility (that has a special dementia unit within the larger facility) is currently costing $5200 a month. The price goes up as she needs more and more care. At the rate we're going she'll be able to stay for a few more years until the money starts to run out.

As the article discusses, when dementia hits someone who is perfectly mobile, keeping them contained is a nightmare. But those places that can keep them contained are really expensive. A regular nursing home can't really do the job.

Deborah said...

Most nursing homes, unless they are specifically for dementia patients, are clueless. We had to school the staff on how to talk to my mother. One idiot told her that she couldn't have seen her mother because her mother was dead. The next time I saw Mom, she cried and said she didn't know "Mama had died." She would ask me if I'd seen her mother. "Yes," I said, "I saw her." "Was she like she always was?" I have no idea what that meant, except that my grandmother had some type of dementia, died in 1955. "Yes," I said, "she was like you remember her." It makes me cry now to recall that moment. Why cause them pain? You have to go to their reality because they can't come to yours. The low paid, poorly trained and sometimes apathetic workers in most nursing homes don't get it, and are not trained to deal with it. There should be special homes or wards with specifically trained staff for dementia patients since few people can care for them at home. It's a 24/7 job.

Largo said...

When I start to feel bitter about such decline, I thank Harvey Krumpet for helping to make me feel bitter-sweet instead.

Largo said...

I knew a woman, distant family, whose 'floaters' in from of her eyes she took to be spiders. Eventually she was seeing then in her stool. There were inside her, and constructing steel cages for her out of their webbing.

I was sufficiently removed that it was nothing I had to witness or deal with, but my aunt used to relate to me the misery the woman must have felt. (It was one of my aun't inlaws who suffered, so my anxieties were mainly for her, having to deal with it. The woman died years ago, may she finally have gotten to RIP.)