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Fragmentation—The Past Few Weeks in Elder Care, Illness, and Video Streaming

April 17, 2015

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Above: CR napping on top of his bedcovers while he waits for the health team to come to a progress meeting—his progress. He is wasting away in his clothing. When he first got onto the bed he pulled his pant's waistband out and up and said, "Well there's one good thing about all this, I've lost weight." Since he didn't need to lose weight there is no comment I can make. It is what it is in his mind. Staedtler Pigment liner (running dry) on a notebook sheet of paper stuck down later into my journal (which is too big to carry around).

I look at the pile of papers on the side table and realize how fractured and disjointed the past month has been.

For three weeks of that month I was actually well. But CR crashed again and went back into the hospital (some complications after bladder cancer cauterization). I remember the Saturday evening it happened because I was feeling well enough, after almost 3 months of flu and bronchitis and a side dish of a cold, to stay up and paint. Dick went to bed early. When his phone rang and he didn’t answer and then my phone rang I knew that at 11:40 p.m. things were going to get interesting fast. I woke Dick and he went into the hospital where he stayed with his father for about 18 hours until he was stable.

CR had 4 days in hospital and almost two weeks in temporary care—where you transition through physical therapy and a crew of nurses and practitioners determine if you’re able to go back to your living situation or, if not, what help will be needed, what changes made. And there will have to be changes. His short-term memory is totally gone. He is on continuous loop—about 60 seconds duration. He forgets if he's eaten a meal. He believes his doctors who have been working to keep him alive have given up on him. He clings to the belief that he is in better condition than his wife—he's wrong—it's the final competition of a game that has played out for almost 70 years. He echoes back things that I have just told him as if he heard them on the news. (OK that belief in my veracity is sensible.) He sleeps a lot. He can hardly see. He no longer remembers where his apartment is, or that it is connected to the same building Phyllis is in, the building that he is in right that moment. He is disappointed that I haven't brought his coat for his journey back to the apartment. He starts to be argumentative when I tell him we just have to walk inside, down a couple hallways, as if we were going back to his apartment from Phyllis'. Then he stops mid sentence. He tells me that he doesn't remember how to get back to the apartment from Phyllis'. The admission, offered spontaneously, crushes him and he slouches down into his chair.

Some of this memory may come back when he reestablishes his apartment routine. Some of it we both realize is gone forever.

On the day I spring him from temporary care and return him to his assisted living apartment I spend several minutes and run through several sheets of paper trying to compose a reminder note I can leave for him so that he'll take his last pills of the day. I can't think what to say, or where to tape it up. If it's on the door and he doesn't see it when he goes to dinner will he see it the next morning and assume it's about tomorrow's pills? Days have no meaning to him any more. What is Tuesday? What is Wednesday? He has asked me in the four hours that I'm with him that day no less that 16 times what day it is. I realize I've started to count a lot of things about his behavior as if I'm compensating for his deterioration by reinforcing my own ability to "control" statistics and lists, as if knowing all these details somehow matters, when nothing matters except sitting right there near him and smiling and nodding. 

Towards the end of CR's spring health run (he has collapsed like clockwork each spring for the past 6 years), Phyllis caught one of the bugs that circulates through long-term care. I remember visiting and being shocked to see how ill she was. She rallied quickly (in about 4 days); a testament to her strong constitution.  

To round out the trifecta of fun I caught another cold, just in time for my sister-in-law’s visit—so at least I don’t feel badly that the folks don’t have regular company. And I’m relieved that they are back to what is a new normal (because in aging you never go back to the old normal). But I’m pretty damn grumpy.

So I’m sitting here with a pile of papers: all the things I started to write down when there were only a couple quiet moments at a time to catch an idea; all the fragments of conversation that Dick and I had while we were trying to be realistic about the folks and while lately he’s been trying to jostle me out of grumpy mode.

One evening I was watching a little bit of “The Voice” (a TV show which my massage therapist turned me onto and which I find very upbeat and fun, unlike most other competition and reality shows) and at a singer’s rendition of “How Great Thou Art” the end scene for a script I’ve wanted to write popped right into my head—that’s scribbled and stacked in the pile. The pile also contains a conversation about love-anger-Dick’s eyes-and-the various examples of love I’ve witnessed in my life.

I was going to share that with you, but I realized that it will be better as a funeral video—short video monologues that my friend Tom and I are making to show at my funeral (yes I plan ahead). And besides, one of the tungsten-halogen bulbs above my head just exploded into a billion bits with a loud pop while Dick was standing next to me saying goodnight—which is actually a good thing because I didn’t have shoes on and he brought me my shoes so I wouldn’t step in any glass, and he cleaned it all up. That’s one of the perks of having lung crud, no one expects you to clean up exploded bulbs.

Isn’t that funny? Writing about fragmentation and having fragments fall all over you. Sinister synchronicity. Nah, it’s just a damn bulb exploding while I’m sitting here trying to put the stack of notes together. Why didn’t they get written in my journal? I didn’t feel like moving and getting the book when the ideas popped into my head—I felt that weak. That never happens. I’m glad I’m starting to feel better because that’s the closest I’ve been to the end of my tether in a long time.

So here are some fragments that I wanted to share with you. I’ve included some movie viewing. Frankly on another day (one without coughing or exploding bulbs) I’d probably turn each of these into a 1200-word blog post, so hey, let’s all rejoice in the brevity that illness brings to me.

• A lovely thought from Dorothea Lang: “Your file of negatives is your biography.” (And in case you don't know—Dorothea Lang was a photographer and she was speaking of actual film negatives.)

• “Destiny needs work.” The older brother in Papadopoulous & Sons. A simple but enjoyable movie about families and life and what makes you happy.

• Red Cow
If you can work out what that means drop me a line. I might have been feverish and hallucinating. I do that sometimes.

• “Top Five” written and directed by Chris Rock is entertaining and well-worth watching, and good to discuss with friends.

• “He’s too worried about acceptance. You’ve got to get on the side of ambition.” Something Pharrell Williams said about one of his protégés on “The Voice.” Think about it. Apply it to an “artist” you know. I think he’s dead on. 

• Halls Black Cherry sugar free cough drops taste like the old “Smith Brother’s Cough Drops,” I had in my childhood. (In the 60s they were still using a close match to the 1948 packaging you can see on their site.) I didn’t realize they still made the Smith Brothers cough drops. I don’t dare try one now, one could only be disappointed over a flawed memory. (That’s the grumpiness talking, and also I really don’t like to use cough drops—I find not talking helps a lot. I just like to have cough drops around when I have to take phone meetings, or when the computer guy stops by; I’ve seen a lot of the computer guy this week.)

• I watched "The Lone Ranger" starring Johnny Depp. It hit all the points I could have hoped for. It is about the incompatibility of justice and life; the inherent sickness and greed in man and the self-delusion of seeing evil as more than you can cope with; "civilized" man's need to cover and justify his actions at the cost of justice and his own soul; and the need to have a tribe. I always felt that Tonto (played by Jay Silverheels in the TV show) was the real hero. I didn't know that "tonto" is Spanish for "moron" or "fool" but now that I do I recall that fools and tricksters are separated by a thread (and that's the way that Depp plays it). Wikipedia will tell you that Tonto is a Potawatomi word, that the radio show's producer remembered from his childhood in Michigan, which means "wild one." In the film Depp's Tonto is a Comanche.

Watching the movie the first time, and then again the second time (which I enjoyed even more because the movie was so long I'd forgotten how some things were neatly tied together), I could not get over the force of the graphic silhouette the costume designer gave Depp's Tonto. It was truly wonderful to see that figure move across the screen. The negative space around that silhouette is endlessly satisfying frame by frame. And all the business with the crow…

I was so taken with the movie after the first viewing, that I called upstairs to Dick and asked to show him some parts, and we ended up watching it all (and it's a long movie so that was my day, but remember I was very ill at the time). And then when it was over I had to try and reconcile Dick's assessment of the movie with mine! I thought I might have to divorce him.

Yes it was too long and many scenes could have been shortened. Yes too many things blew up or crashed into each other. (Jerry Bruckheimer produced it—it's what we want from him.) But the backstory on Tonto is so achingly wonderful. And unlike Dick I thought the comic bits were balanced well with the dire circumstances (heck I'm funniest when my back is against the wall) and the grave, calm acceptance of the Comanche chief. The fact that it was told in flashbacks from the 1939 Golden Gate International Exposition (and we see the Golden Gate Bridge going up in the background)…well I loved it.

We all have to hold on to something, whether it's a dead bird or a silver star; some thing that means something to us and anchors us and allows us to be in the world. These things remind us of ourselves, who we were, what we became, and how we can hold onto ourselves by letting go.

Yes I did find it annoying that they included John Phillip Sousa marches at an 1869 celebration—songs that weren't written for more than 20 or 30 years later. Use of the Finale to Rossini's William Tell Overture at just the right time almost made up for that. And Hans Zimmer's score is hauntingly beautiful.

I would watch the movie all over again, if it weren't already so late (when I'm writing this). I'm not hallucinating. But we all have stories from childhood that carry our baggage. I know this is mine. And I'm still coming to grips with how different Dick's opinion of the movie was to mine. But then his childhood was different too. 

• Acorn TV is messed up. I got a message from them on March 12 to renew my membership. I did so. They billed my card on March 13. On April 9, my anniversary with them, they discontinued my service and left a RENEW message up. I’ve tried to contact them 3 times via emails and once with voice message. No luck. I may have to cancel my subscription since it’s been over a week and I don’t get the service I’m paying for. I may never find out what happens to the model in that show I was watching on April 4.

• I have been GAZING at the illustrations in “Animal Studies: 550 Illustrations of Mammals, Birds, Fish and Insects” by M. Méheut. (Dover book, out of print, ISBN 0-486-40266-5) I highly recommend this book if you can find a copy of it. Jean-Christophe Defline (another of the Sketchbook Skool teachers) recommended Méthuet to me because of his gouache paintings.  Méthuet is a master with gouache, but it is almost more fun to look at the sculptural solidity he gives to animals in simple pencil sketches—all while retaining a graceful fluidity of line and gesture. This is important work.

• OK, there are some other things on slips of paper, but I think those are definitely hallucinations.

Let’s leave it like this:

Remember that life is very short. Work your butt off even when you’re sick. (But watch some TV too. And read a book if you can hold your head up.)

Tell the people you love that you love them, because at some point you are going to catch yet another bug (and another bug, and another) and be too grumpy to contain yourself, your real self. 

And when that happens all you can do is be thankful if you live with LB—for his ability to take infinite amounts of grumpy and keep a firewall between love and anger.

  1. Reply

    I so sympathise with your situation – I have a similar one going on with a 95-year-old, multi-ill mother-in-law who lives a stone´s throw from us (all other relatives 1000 kilometers away). I know the grumpy mode and I know how all one´s own needs can be repressed for a long time when necessary, but it will catch up with one – for some reason on the day one had planned to finally get on with all those things one had to postpone.

    Do take care and hope you find your balance again soon. For me, drawing has been the best medicine, and that´s how I found your blog. 😀

    • PeggySu
    • April 17, 2015
    Reply

    Could “Red Cow” be a riff on “Red Bull” energy drink?

    Thanks for sharing this. It’s a good reminder that much of why life is hard isn’t something one could have avoided by being smarter or whatever. And a good reminder of how to hang in there.

    Best wishes for the future.

  2. Reply

    Viktoria that’s a tidy summation. Drawing is what has kept me going my whole life, but especially in the past several years through these illnesses and crises with the folks. I’m concerned that in this latest “bug” I’ve been able to do very little sketching. Which is totally unusual for me.

  3. Reply

    Thanks Claudia, it’s interesting to me to sift through this pile of papers and see the notes, not dated or timed, with no indication of order, written on scraps of yellow legal pad paper I was using as protector sheets while painting. I’m glad you found it entertaining!

  4. Reply

    PeggySu, that’s interesting. I don’t think about “Red Bull” or every have any. But it could be a product of some other sort I saw in a TV commercial (if I watch shows “on-demand” now you see commercials you can’t fast forward through).

    I’m also “guilty” of writing and stopping 1/2 way through a word in these types of notes, but this was definitely “cow.”

    Maybe one day years from now it will pop into my mind, and I’ll write it down! Thanks for writting PeggySu!

    • Karen
    • April 17, 2015
    Reply

    Roz, I really enjoyed this beautiful post. I’ve been through this long decline with four now, although not in such intensity. What you offer here would have been great support. We can all learn more of grace, acceptance, gratitude.

    As for Red Cow, perhaps it’s a reminder of the Twin Cities restaurant (3 locations) that serves hand crafted grass fed beef burgers and craft beer. Let me know when you want to go.

    • Pat Morin
    • April 17, 2015
    Reply

    Roz, you are where I have been and which is really why I took SBS. While many of us share this common journey ultimately we are somewhat alone in it. Our responses are certainly going to differ. One thing that I will share with you that helped me in dealing with a person whose memory is fading and fluctuates is to go with the line of conversation if you can.

    It might be counter-intuitive and perhaps you might feel you are lying, but this recommendation works. If the person is talking about something that actually happened in the past and you know about it especially if it is postive talk about it with them. Arguing with them and even trying to reorient them to the present often doesn’t work. They often resist and get mad.

    As an example, my Mom thought that her cousin had just had twins. She wanted me to congratulate the grandparents(Her Mom’s sister’s brother who died in the 1960’s) as she thought I was going to visit them. She also asked me about the babies as if I had seen them. I knew the twins were boys and told her this. She was thrilled, and smiled. She kept talking about a baby before this and everyone else thought she was talking nonsense. I realized she was living a moment in the past. It was obviously a very pleasant moment, so I encouraged it.

    With memory loss regardless of cause sometimes people also remember negative events as well. I would attempt to switch those memories and talk about something that might have happened around that time that was a good thing or just talk about something you know they like.

    BTW a very smart doctor recommended that I do this, so I cannot take full credit for my actions on this (even if I am a retired nurse). Perhaps some would not agree with the approach, but I think keeping a person happy in their last days is a good thing to do for them if it is possible.

    My favorite saying is the serenity prayer and what I am recommending changes what you can, instead of battling what you can’t. I hope you feel better soon. I would fix you homemade chicken soup if you lived close by (if you were not allergic). It sound like you could use the enzymes in the soup. Keep you in my thoughts!

    Pat

    P.S. You are a woman after my own heart. Yesterday my hubby told me he loves the way I tell a story. He knows that I never give a short version. I feel a kindred spirit in that. Thanks for sharing even in these difficult times for you.

    • Suzanne hughes
    • April 17, 2015
    Reply

    I agree with Karen and believe your Red Cow note is about eating there. They have great burgers. Thanks for the movie recommendation. I am on my second day home in bed sick and a nice long movie with Johnny Depp sounds perfect. I hope you feel well soon.

  5. Reply

    I sympathize with your about the situation. It is hard to watch elder parents as they get ill or confused or a combination of the two. Just remember to take care of yourself too!

    • Julana
    • April 17, 2015
    Reply

    Roz, I am sorry for your elderly relatives. I hope their ailments are alleviated soon.
    I hope your Acorn account gets fixed, too. The little things help. MN winters are so long.

    • Lori
    • April 17, 2015
    Reply

    Thanks so much for sharing all of this. You are so generous and sincere. It was just such a touching post and I wanted to say thanks.

    • Dana Burrell
    • April 17, 2015
    Reply

    I am not much of a movie goer or even watcher but I loved this “The Lone Ranger”. I even went to the theater to see it. Yes, I could have done with a bit less of the slapstick ( the Hi ho Silver stuff) but I was especially taken with Depp’s Tonto. I couldn’t tear my eyes away at the end… as you said, achingly beautiful.

    Now I’m going to be on the look out for Halls Black Cherry sugar free cough drops… In grade school I spent my lunch money on those Smith Brother’s Cough Drops. I wonder if the taste will live up to my memories.

    • cynthia
    • April 18, 2015
    Reply

    This is the most wonderful, helpful post! Elder care, illness, stress, coping… plus viewing recommendations. Awesome. Thank you!

  6. Reply

    R: Often the best choice available is to be a compassionate witness to someone’s life: your drawing does this beautifully.
    SO many of us who have experienced these family events use drawing/creativity to deal with LIFE . Your blog provides a place to gather and find creative community acknowledging the bigger journey through the work of our hands!

  7. Reply

    Karen, whether that was it or not, as soon as I’m well we’ll have to get over there. Maybe Suzanne can join us!

  8. Reply

    Pat, thanks for writing. I appreciate your advice, which is actually something I already practice based on the advice of two other friends who have preceded me in elder care. When I say CR becomes argumentative, that’s just his mode, not me arguing with him. I don’t try to argue. He is essentially battling with himself in a gruff confrontational way. You just have to let him burn through it and get back to something else when he takes a breath.

    This has been one of the most difficult parts of elder care for me because my relationship with CR was always all about arguing. Usually in a playful way, but more typically in serious way. We have very different ideas about some major life issues and political realities. (Which is odd because we also agree on some things so maybe it’s not all that odd.) Anyway he’s sexist his view of women, even his beloved daughter (who left to go to college and since then has never lived hear by) is of women as inferior, though all the women in his life are incredibly strong and he was raised by a single mom—as you can see it’s complicated. So he is often making jokes about women’s inferiority which comes from his own insecurity and his own tone-deaf ear for humor. (In other words he is much like any other “greatest generation man.”) Added to this he LOVES to argue, and will instigate (or would when his brain was active) arguments about everything—his way to be playful, and sometimes bullying. In fact we had a long talk about his love of arguing and its impact on his wife of over sixty years (at the time) before he lost his full capacity. That was very interesting and a gift to have received.

    But coming from this background I had to train myself not to argue with him because that was our habit. I had to shift over to focusing on basic functioning issues.

    On the few occasions when his son or I have had to correct him because of what else was happening (talking with a doctor, he’s about to put himself in danger) he doesn’t get mad so much as frustrated, because he still sometimes kicks into realizing that his brain isn’t telling him the truth. He has lived his whole life only for his brain (a long story).

    What I find sad is that when a particular cousin is brought up with either of the folks we have to tell them again that he has died. (He was very young and it just happened last year and neither can retain the memory.) Then we have to cope with the sadness all over again. Consequently we steer conversations away from this area as they don’t do well with that.

    On the other hand they get fuzzy about my brother-in-law’s death in 2000 and that is something we can discuss with them because we are just filling in details and then are able immediately to fill in with all sorts of fun memories of family situations and all of that is very pleasant for them. They still can access their long term memory from 15 years ago and before.

    All this said, however, there are many days when I walk out through the building smiling at all the staff and residents (I’m there so often I often chat with several people before I get out the door) and then as soon as I get into the car I cry a little for what is lost. Then I take a deep breath and drive home. And I focus on all the good moments.

    I appreciate your kind thoughts about chicken soup. Since December 21, 2014 when I got the flu and began this chain of respiratory illness (flu, bronchitis, well for a week, cold, well for two weeks, cold and bronchitis again) I have made chicken soup twice a week (sometimes Dick cuts the vegetables up for me if I’m just starting a new bout of something).

    Dick says my chicken soup is excellent, and I love it too, but I am totally over it. I want to be eating something else for a change! And I would like the house to smell less like garlic—I’m not afraid of vampires!

    But that said I made a new batch today and had some for lunch. So here’s hoping the soup works some magic.

    And Pat, why would anyone tell a short in a short version (unless of course someone was about to fall off a cliff or otherwise be injuried!)?

    Thanks for the support! I find it has been really helpful to have local friends who are going through this to talk with. And the reason I originally wrote about these experiences in this post http://typepad.rozwoundup.com/roz_wound_up/2014/07/elder-care-the-hardest-job-i-have-ever-hadand-a-book-recommendation.html
    was to encourage people to build a support system.

    We are two highly intelligent, medically savvy, fiscally able individuals. We are both busy professionals. This has been the most difficult thing to negotiate through EVER (and there have been some difficult things in the past).

    I do not see how someone without two highly intelligent, medically savvy, fiscally able individuals can get through this.

    I think people have to really start looking at aging in this country (the US) and start making hard choices about a number of issues. And they can start by clearing out their own houses of all the accumulation of stuff (i.e., junk that no one wants) so that no one else ever has to do that!

    I would go nuts without my friends to talk to!

  9. Reply

    Sounds good to me. When you’re well perhaps you can join us there?

    I hope you enjoy the Lone Ranger! Get well SOON!

  10. Reply

    Thanks Joan, I have trouble with the last part of your comment. Hence this string of illnesses. My immune system is shot from stress and I seem to pick up every bug on offer. I’m hoping that the rest of the year will go better!

  11. Reply

    Julana, still no Acorn. They have a big mess according to the service person I spoke with today. And little energy to do anything about it, it seems. I may have to quit and rejoin at some later date. I can’t stand paying for a service and not receiving it.

    Both folks are stable at the new normal for the time being. I’m still to sick to see them but Dick’s sister has been visiting from out of town all week and Dick has gone over for his usual Saturday visit (pills and bathing for his dad) so life will be somewhat normal for a little bit.

  12. Reply

    Thanks Lori. I appreciate you writing in. The worst thing about being sick for me these days is that I can’t do things with the folks. So I pick up my pen and sketch and try to relax for a change. We are going somewhere I don’t care to go, but will we go there regardless.

  13. Reply

    Dana, so glad to hear you also loved the Lone Ranger! I wish I could have seen it in the theater!

    The Halls Black Cherry sugar free cough drops should be available at Target, Walgreens, et. al. They aren’t exactly the same, but when you taste one you’ll see what I mean.

    Few things live up to memory. Pez is the exception.

  14. Reply

    Cynthia if you thought this post was helpful then you need to read my earlier post on eldercare where I talk about some of the things you have to do to get people moved, etc. http://typepad.rozwoundup.com/roz_wound_up/2014/07/elder-care-the-hardest-job-i-have-ever-hadand-a-book-recommendation.html

    And at the end of that post I have some recommended reading that will get you through Elder care! Good luck. Thanks for reading and writing in.

  15. Reply

    Yep Ellen, I find that right now really all that matters is just sitting there and listening. And of course since they always nod off, drawing!

    thanks for writing, I hope all is well with you.

    • PeggySu
    • April 19, 2015
    Reply

    I totally agree about wondering how single or less knowledgeable people get through a lot of life today, even income taxes and insurance and money management seem more complex than they used to. Since you mentioned “medically savvy” I’ll describe something medical that surprised me. A few years ago a friend’s elderly mother, who was then still able to live alone in her condo where my friend’s sister could check on her every day, suddenly started going downhill very quickly including having hallucinations. It turned out that the mother had recently gotten a refill for a prescription she’d been taking for some time but had been given a new generic rather than the brand she’d previously been taking. Once this was resolved the mother was back to her former state.

    • Kath
    • April 22, 2015
    Reply

    Alas, I fear I am probably more on Dick’s side of the Lone Ranger…I watched it once and thought it was awful. But now I am going down to the home DVD shop in the basement and am going to watch it again tonight, since the man is in CA for work and I am on my [self-indulgent] own. Thanks so much, really, for your lovely writing, drawing, and your willingness to share.

  16. Reply

    PeggySu, I’m sorry this issue was caught with your friend’s mother. I know from personal experience that generics don’t always work for me. It’s scary.

  17. Reply

    Kath, I know that everyone will never agree—but if you didn’t like it when you watched it I’m sorry you’re going to watch it again. I hope it’s not too late to watch something else.

    I’m trying to think of a “perfectly wonderful movie” that both Dick and I enjoyed.

    You might try “Guarding Tess.” It’s the only movie with Nicolas Cage that I actually like. He and Shirley Maclaine (sp?) are absolutely marvelous in it, with a great supporting cast. We throw quotes around at each other from the movie all the time—”Lost interest in peas…”

    And there is “His Girl Friday” with Cary Grant and Rosalind Russell. I know that movie off by heart.
    Happy movie viewing!

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