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02 July 2012 @ 01:28 pm
The Real LJ Idol: "In Some Distant When"  
In Some Distant When
real lj idol | week 32 | 2000 words
Open topic.


They say that when you go into emotionally difficult situations, it's best not to have too many expectations. But it turns out that no matter how hard you try, you'll still have a few you're not even aware of.

This is the story of my visit to my sister in Idaho.

I wrote about her a few weeks ago, about how Huntington's disease has slowly stolen her away from us, and is taking her abilities and independence from her as well. I'd thought many times about going to see her, but always got caught up in the physical and emotional logistics of the situation. Not only is it tough to get from Sacramento to the nursing home in Idaho where she now lives, there's the social discomfort of making conversation with someone you really don't know anymore. I'd seen her just twice in the last six or seven years, after she finally got over the delusions that had caused her to "disown" me eighteen or more years ago.

After writing that story, I looked at travel options yet again, and this time I found something I thought would work. I emailed my brother-in-law to see when his next planned weekend visit to Idaho would be. We agreed to meet up then. I would fly into Boise on Friday afternoon, and then drive two hours to the town near where she was staying. He and I would catch up over dinner on Friday night, see my sister on Saturday, and then on Sunday morning I'd drive back to Boise and fly home. (Direct flights between Sacramento and Boise are so limited that travel decisions are dictated by airline schedules).

Everything seemed promising until my brother-in-law called me on Thursday night. He had pneumonia and was too sick to make the trip. He'd been sick for several days, but seeing the doctor that day had stripped away any remaining shreds of denial about just how sick. So he couldn't travel, and my arrangements were nonrefundable. That was exactly what we'd both hoped to avoid.

He briefed me on activities I could do with my sister, and what her current limitations are. She can still get around with her walker, but only over short distances. The nursing home makes her picnic lunches to take on outings now (foods she can reliably manage), and she tends to get tired after about three hours. She remembers the distant past better than more recent years, and she gets stuck on ideas and tends to repeat herself. But she's in a happy state of mind, and mostly remembers the good things. After learning more about Huntington's and why it causes dementia, none of those guidelines surprised me.

My Dad's birthday was on Friday, so I called my parents from the hotel. My mother told me repeatedly that my sister has gotten worse, and that her movements are much larger and uncontrolled and now also affect her speech. Maybe my mother was trying to prepare me—I don't know. But my sister is her oldest stepchild (yes, she makes that distinction), and being who I am, I heard it instead as a blame-ridden litany of how my sister would be difficult and disappoint me.

"This trip is more for her than it is for me," I said.

It was true. Huntington's caused the delusions that made my sister mad at me so long ago. Now that it has erased them, along with her memories of that estrangement, I'm part of her family again—a family she loves and misses. Like anyone confined to a nursing home, visitors are a real treat for her. Even though she was disappointed that her husband wasn't coming, he told me she was very much looking forward to my being there. We knew things would be a little more difficult without him, but that wasn't what mattered. She was excited about my visit, and she'd been talking about it all week.

Looking back, what he'd said about her mental state should have reminded me of another, more familiar condition, but I'd overlooked it. So had everyone else.

When I got to the nursing home on Saturday morning, my sister was dressed and ready to go. She's a very early riser, so she'd been out to the front a few times to look for me. The staff sent me around the corner, and there she was, making her way toward me. But when I got closer, she announced that her sister Karen was coming to see her, and started to continue past me.

"That's me," I said. "I'm Karen." I thought that would clear things up, but it didn't. Not at all. Over the next few minutes, I realized that the one, small expectation I'd had was still one too many.

My sister doesn't recognize me anymore.

I'd hoped to take her out for a drive, and maybe stop at the waterfalls nearby. But whatever mental image she has of her sister, I don't match it. I'm a stranger now. Going for a car ride with a stranger isn't fun, it's just scary.

My plans evaporated to simply staying at the nursing home and picnicking under a shady tree.

The nurses helped her out to the glider rocker in front of the building, and got her set up. She told me later that they'd cleaned her walker up for company, and from the pictures in her room I could see that she was wearing her favorite clothes. It hurt to know how much they and she had prepared for this, only to have me be a disappointment to her.

We chased memories around, including the horses she'd loved to ride and the farm we'd lived on until I was six. She remembered being a counselor in Eugene while getting her Masters' degree in Psychology, and that she used to sing and play the guitar very well. She didn't talk about me or my younger sister at all, but she mentioned the names of our two other siblings. The three oldest kids are from my father's first marriage, and all lived together until my sister was fourteen. My father remarried then, and she chose to stay with him and my mother. I was born fifteen months later, and four years after that she went to college. The biggest block of time I had with her was in those first four years. Now I wonder if the toddler 'me' is the only one she remembers, or if I'm simply more of an idea than a reality.

Of the few things she remembers, there is one I wish she didn't: she was raped by a group of boys in her late teens, and became pregnant. Her mother wanted to keep the baby but her own Huntington's was too advanced for that, and they had to give the baby up for adoption. My sister never had any other children.

I so wish that had been one of the things she'd forgotten. How unfair to have those memories remain intact when so many good ones were lost. I hope they're limited to being just "headlines" in her history, but even knowing that they happened is more sadness than she needs.

She told me many times how nice it was to be outside, and thanked me for bringing her out into that beautiful day. She has always loved being outdoors, whether she was riding horses or hiking or just sitting by a river. It must be hard to need supervision now for something as simple as sitting outside.

She also told me how much she loved her husband, and that was so nice to hear. For many years, the Huntington's made her impatient with him and eventually angry, and he is such a wonderful man and has loved her so strongly and solidly through years of aggravation. Even if she doesn't remember everything about their past and the experiences they shared, she remembers those qualities in him that first made her fall in love. Those seem to surround her now, helping to comfort her even when he isn't there.

She started getting sleepy after just about three hours, and I knew it was time for me to leave. The nurses helped her with her walker, and we all went inside. She perked up enough to get there on her own, but soon realized she needed a nap. Her bed, though, was unacceptable to her, and it took me a few tries to understand exactly why.

I'd barely left the room to see about getting a more colorful blanket for her, when one of the aides asked if I needed something. She not only knew what my sister meant about wanting a different blanket, she knew which one it was. She couldn't find the blanket with the nature portrait of horses, but she found a similar one with black bears that apparently was good enough.

Just in the time I was there, I could see why my brother-in-law had chosen that small facility in that tiny Idaho town. The staff is patient, and they are kind. They keep the patients comfortable and as entertained indoors and outdoors as possible. There are regular bus trips out to eat or do other activities, which gives the residents back some sense of the independence their bodies deny them. The assistants take patients to a windowed waiting area and sit and chat with them. One aide sat in the cafeteria with an elderly woman, talking to her and cradling the woman's bandaged feet on her lap.

Those people who love their patients and truly care for them with kind words and soothing touch are such a blessing. My sister's mother was known for her occasional jailbreaks out of her nursing home, but my sister has never tried to do that. She may lack the energy or spark, but I hope the real reason is that she simply doesn't feel the need to escape.

I took the blanket back to my sister's room, and made her bed with it in place of the dull white one she hated so much. Then we quietly traded our goodbyes. I don't know how she usually is when visitors leave, but she didn't seem upset. I wonder if that might have been because she still wasn't convinced I was anyone she even knew.

I drove back to the hotel feeling emptied out and sad. I decided to write this all down because it's easier than saying it out loud, easier than admitting all the reasons this whole thing hurts. I'm afraid to go too far into all the pain below the surface, because if I got there, really got all the way there, I know how hard it would be to climb back out. God help me if my parents ask how things went because I don't want to talk about it, and they'd want to know why I don't want to talk about it. I don't have the energy to defend that choice. Sometimes, belaboring the painful things you can't change doesn't actually make anything better.

Most of all, I can't shake the feeling that I completely failed at doing the one special thing for my sister that was the point of the whole trip.

My husband offered a perspective that I'm trying to hang onto. It might seem like a long and expensive journey just to wind up sitting with someone under a tree for a few hours, but even if my sister thought I was a pleasant stranger, we were still outside enjoying the beautiful weather. For her, it was a really nice day.

I can believe that intellectually, and maybe in time it will start to feel true. But my fear is that it doesn't complete the story for her. I know she enjoyed herself, but what if her lasting impression is that she waited and waited all weekend for Karen to visit her, and in the end Karen never showed up?

Thanks, everyone, for your support. You can vote for this and other fine stories here.

Kristenpixiebelle on July 2nd, 2012 08:37 pm (UTC)
*hugs* I can't imagine how hard all this must be. </p>

But you didn't fail her in anyway. Not at all. You can't help that she didn't recognize you, stop feeling like you've failed her. It sounds like you did give her a very nice time and that is all that can do.

The Coalition For Disturbing Metaphorshalfshellvenus on July 2nd, 2012 09:04 pm (UTC)
It's the thought of her waiting for me all weekend and thinking I didn't come that really gets me. I know I can't do anything about it, but I also know how much that would hurt for her.

I remember how much visits mattered when my grandparents got older and had little left outside of their family. That sense of broken promises is all around you, when you're in a situation like that. Can't think about this too much or I'll start crying and never stop.

*sigh* I so wasn't expecting that possibility. Thinking back on what my B-I-L said, "Alzheimer's" should have occurred to me. She doesn't have Alzheimer's, but a lot of the results are the same. I don't think she'll ever forget her husband or my parents (her mother didn't forget her children), but there will probably be more and more she doesn't remember as time goes on.
(no subject) - pixiebelle on July 2nd, 2012 09:11 pm (UTC) (Expand)
blahblahblah, whateverkathrynrose on July 2nd, 2012 09:37 pm (UTC)
First. Hugs. This was very personal and I totally connect with it. My mom has dementia and we were estranged for most of my adult life, and thankfully reconnected before she completly lost track of who I was.

You didn't ask for suggestions, but I have one. If you have any old photos, you could pick a few that are spaced out enough through time, so it's clear who you are in the progression, then write her a note saying you were going through photos and thought she might enjoy a copy.

It may seem like an expensive picnic, but it was more valuable than can be immediately noticed. From where I'm sitting, anyway.

The Coalition For Disturbing Metaphorshalfshellvenus on July 3rd, 2012 06:52 am (UTC)
Oh, I'm so sorry you're going through this with your Mom. It IS nice to have reconciled before it was too late. It will surely help you, and I imagine that it surfaces for her every now and then and at some subconscious level helps her regardless.

I like your suggestion very much. I really wish I had more photos from the past. My parents are the keeper of those (back to that topic again), and my Dad had a long and unfortunate love-affair with Polaroid technology. I'm sure some of them have survived, though. I do think that would help, and I saw that she had one of my Christmas photos of the kids up in her room. Some more recent pictures would probably be nice all the way around.

I think that entire trip was easily worth it if my sister got some sense of being loved and cared for. But that's the part that also leaves me most in doubt, at least right now.

Thanks so much for your suggestion, and for your kind words. They really help.
(no subject) - kathrynrose on July 3rd, 2012 04:38 pm (UTC) (Expand)
(Deleted comment)
The Coalition For Disturbing Metaphorshalfshellvenus on July 3rd, 2012 07:01 am (UTC)
I hadn't thought about how similar the side-effects of my sister's symptoms were to Alzheimer's until the shock of her not knowing me. My BIL never saw that coming either, or he'd have helped prepare both of us better.

I don't know how deeply my sister remembers even the things she talked about. She mentioned the last horse she had several times, the one that bucked her off and caused her to stop riding. She still loves that horse, though, and I asked her husband if he had a picture of it to put in her room. There are lots of pictures of random horses there, but I think a picture of her own horse would mean more. I also noticed that she had one picture of herself and her husband, one of the Christmas photos of my kids, and another of some (I think) family friends. It seemed like it would be nice to have pictures of all of her family there, if not on the wall then in a book she could keep by her bed. Most of the time, that's all she has left of us, so I think that might help.

I'm sorry it was so hard to read about, and I understand why-- it's for all the same reasons that it's hard to write about. You wish it were different, and so do I. And unexpected pain can be the worst of all.

Thanks for your kind and gentle words.
notodettenotodette on July 3rd, 2012 05:00 am (UTC)
I'm so sorry.
The Coalition For Disturbing Metaphorshalfshellvenus on July 3rd, 2012 07:02 am (UTC)
Me too. There was so much I was prepared for, but I never saw this particular cruel twist of events coming at all.

I left her homemade cookies, and I hope they help make things seem more "real" over the coming week.
Pika the Brazen Ninjaporn_this_way on July 3rd, 2012 05:15 am (UTC)
Oh holy hell. This was really intense and really powerful. Writing something like this takes a shitload of courage and strength, and I admire your willingness and ability to make this post.
The Coalition For Disturbing Metaphorshalfshellvenus on July 3rd, 2012 07:07 am (UTC)
I'm glad to hear that it holds up as a story, apart from the emotional impact of the event.

I hadn't planned to write about this at all, and had even started two completely different things. But by Saturday afternoon, this was all I could think about, on all possible fronts. Writing the truth of it seemed the best way to make sense of it, if only for myself.

Thanks so much for your words of encouragement. I appreciate them!
Lose 10 Pounds of Ugly Fat...  Cut Off Your Head.n3m3sis42 on July 3rd, 2012 11:51 am (UTC)
Oh, wow. I can't say I have been there exactly, but last year I visited my friend in the ICU the day before he died. I didn't know what to say and he was intubated and couldn't speak. So I mostly ended up just standing there like an idiot and when I left I felt like I'd failed at visiting him.

People tell me you can't really fail at visiting someone who's dying. I think the same rule applies with people who suffer from dementia. But I think it's probably normal to leave feeling like you have. It's an impossible situation, really.

The Coalition For Disturbing Metaphorshalfshellvenus on July 4th, 2012 03:58 am (UTC)
I think if she hadn't thought she remembered "Karen," her husband and I would have been a lot more prepared for how this turned out. But she did seem to enjoy herself, and there probably aren't enough days like that.
Jemima Paulerjem0000000 on July 3rd, 2012 04:54 pm (UTC)
The Coalition For Disturbing Metaphorshalfshellvenus on July 4th, 2012 03:59 am (UTC)
Thank you. *hugs back*
(no subject) - jem0000000 on July 7th, 2012 06:38 pm (UTC) (Expand)
A Sentient Being: Two Kittiesalien_infinity on July 3rd, 2012 09:31 pm (UTC)
I'm so sorry you've had to go through that.

The Coalition For Disturbing Metaphorshalfshellvenus on July 4th, 2012 04:01 am (UTC)
Thank you. It sure was unexpected. It's harder to know what's going on inside the head of someone who remembers parts of things (like names) but not all of them.
beldarzfixonbeldarzfixon on July 4th, 2012 01:42 am (UTC)
Struggling for an appropriate response (and noticing the commment button saying "say what you feel")

You did a good thing. That's what I feel, and feel I should remind you.

Add me to the *hugs* list. =)
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 06:28 pm (UTC)
I knew this would be hard for people to respond to, so I understand completely.

And I appreciate your thoughts very much! The big-picture perspective is really helpful when the detail-view offers nothing but confusion and doubt.
Myrnamyrna_bird on July 4th, 2012 02:54 am (UTC)
I remember your other story and I am so glad you decided to go see her. I know it must leave you up in the air because she didn't recognize you but it is really likely she was looking for that little four year old from her past. It sounds like it was a pleasant day for her overall. Pat yourself on the back for being such a loving little sister and doing the best you could.
This was beautifully written. Many, many hugs to you.
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 06:36 pm (UTC)
but it is really likely she was looking for that little four year old from her past.
More and more, that's what I think was going on. Which is sweet, really, but so unexpected in terms of what we thought she was thinking.

It was definitely worth the trip if it made her happy, and I sure hope it did. Thanks for the encouragement. :)
whipchickwhipchick on July 4th, 2012 03:05 am (UTC)
It's so tough how the preparations and technical elements of a visit to someone so ill completely dwarf the visit itself :( My dad was in a nursing home for awhile, and getting to his state, driving to the home, getting down the hall, all felt so big and difficult, and then I'd see him for half an hour and he was ready for me to go. I really recognize the feeling of helpless futility here. If it's any consolation, I think you're doing it right - all you can do is be there in the ways you can, at the times you can, and let her have the experience she's able to have. Good luck :)
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 06:40 pm (UTC)
It's so tough how the preparations and technical elements of a visit to someone so ill completely dwarf the visit itself :(
I hadn't thought of it that way, but it sure was true here-- mainly because it was a geographically difficult place to get to, at least from where I live. Visiting your Dad must have been harder, since you don't live in his state AND you travel so much. That would seem almost Herculean to me, trying to squeeze that into a life that so often demands you be somewhere else. Not even a consistent somewhere, just "somewhere" that you usually can't change or choose on a short-term basis.

you can do is be there in the ways you can, at the times you can, and let her have the experience she's able to have.
That's a nice way of looking at it. I can't change or help what she's thinking, but if it happened to make her happy, that's what matters.

Thanks for the kind comments, and the perspective!
m_malcontentm_malcontent on July 4th, 2012 04:24 am (UTC)
So sorry you are having to go through this...words are inadequate. I think you made her day better than it would have been otherwise. Small victories are no less important.
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 07:12 pm (UTC)
Small victories are no less important.

That's a really good way of looking at it, because in her current situation, a better day is very much an important thing.

Thank you.
jacq22jacq22 on July 4th, 2012 10:41 am (UTC)
This was a real trial for you, yet what you did you did for her, her disease has robbed her of normal memory and thoughts.
Just taking her outside was a great thing.
I have had a lot to do with very similar cases, know just how harrowing it can be. (worked in a nursing home for part of my life)

The photos are a good idea, also we found music was a fantastic trigger. I played irish songs for one, symphonies for another and coaxed one to shower by singing Daisy to her.
Know how helpless you can feel, you did the best you could,Great writing.....
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 08:05 pm (UTC)
I thought of you while visiting there, and of someone else on my f-list who is Swedish and works in an old-folks home. Both of you adored your patients, and she brought them a lot of comfort and happiness, I think.

I wonder whether she has a walkman, and could listen to CDs? It's so hard having to share a room (one of the hardest aspects of day-to-day living in a nursing home, I think, because it's a constant reminder of where you are and of the loss of privacy). The photos would definitely help, but it would also be nice to send her some music she likes. I'll suggest that to her husband! Thank you!
m strobelmstrobel on July 5th, 2012 01:47 am (UTC)
Oh man, that broke my heart. I can relate to worrying about such "what ifs" as that - not anything similar to your experience, but I do know that feeling and how it can gnaw away at you. ♥ Which means I have zero advice/comfort to really offer apart from internet hugs! (And obviously box ticking because you're awesome.)

Edited at 2012-07-05 01:48 am (UTC)
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 08:08 pm (UTC)
I can relate to worrying about such "what ifs" as that
I'm glad to hear someone else knows what that's like.

It was a hard trip, but it's those larger questions that really hurt. My sister's situation is so lonely and isolated now that the thought of adding disappointment onto that instead of happiness just really eats away at me. I hope that's not the feeling that stays with her, and that she simply remembers it as being a nice day-- however vaguely.

Thanks so much for your warm thoughts and hugs!
devon99 on July 5th, 2012 09:05 pm (UTC)
I read this when you first posted and couldn't leave a comment. I still don't really know what to say, other than this moved me a great deal. It must be so very hard for you and my heart goes out to you.

*hugs you*
The Coalition For Disturbing Metaphorshalfshellvenus on July 5th, 2012 09:45 pm (UTC)
Oh, I completely understand, and I knew that might be a problem for readers. Sometimes, it's a "What CAN you say?" situation. At least I'm able to respond to the comments-- I was half-afraid I wouldn't be up to doing that.

I do feel a little better, now that it's been several days.

Thanks, as always, for reading. I know this one was hard. *hugs you back*