What flavor(s) of Ensure do you buy? Have you knocked a few back yourself? I did the feeder routine, remember the liquid thickener. I also did the Ensure thing for myself, when deathly ill. That stuff is expensive, some store brands are cheaper, some flavors better than others. It really can be a calorie booster. Oh yes, Boost. Another one.

I now try to have eye contact with every person I meet in a day. Also spoken platitudes. I also know alone-ness, worse when it is with others. Especially the one inching closer to death. All so fast at the end.

I read the local obits daily. A habit. Now I know names and faces there. I think I began in earnest when my husband died. I had friends of ours who were unhappy, and willing to say that, that I had no services. His cremains were scattered as I wished, by myself, no witnesses except my dog, whose box of 'rains sits on a table now. I know where they will go, in my time. A woman I knew and liked, her obit is now back in the paper, preceding a service at the UU church. She got early-onset Alzheimers, and after four years released her spirit, leaving behind a wife and family. I don't go to services. More friends/acquaintances of mine are choosing to opt out. Of life.

Chin up! Or chin up? We do what we can. Peace, brother.

consider yourself "a stoic agnostic absurdist," but I think you're also a bodhisattva.

You're also a really good writer.

I like your employment of the term "off load." ; )

This song came around the other morning. "What Pain I Have Endured Since Last Year." And yet, they can get high, in it.

[video:https://www.youtube.com/watch?v=-fEnKNY5Ggc]

The power of true love is something I witnessed when my own mother who was in her 80's spent nearly nine years caring for my father who suffered from Alzheimer's. She was finally forced to place him in a nursing home for the last two and a half years when she could no longer physically care for him. But she still visited him twice day every day when he was there. I believe that even in his last days, my father knew that he was extremely loved. And love is the greatest gift anyone can give to another human being.

Your story of you and your Sweetie's love is very uplifting to read. Your Sweetie was very unfortunate to have contracted this horrible disease in the prime of her life, but she is also very lucky to have a husband who loves her as much as you do. Thank you for sharing your story with all of us. We can all learn a lot from it.

Your routine seems too much for one person. When a dear friend of ours was in her late stages of ALS she was in the Royal Victoria Hospital in Montreal, hospice centre. Her family spent a lot of time with her as we saw from a video her son made. He is a film maker for the Nation Film Board. Her first grandchild arrived in the same hospital and was brought to her room. It was a heart-breaking video but the over-riding theme was love. I was living on the other side of the country at the time.

I am left wondering if you are not getting more help because of the US health care system. Maybe it's because you want to be the one taking loving care of your wife. It is a heroic task and you appear to have found a good way of getting through each day.

I'll be thinking about you today, what a lesson of love you have described.

edited to remove typo in subject line. Obviously I am failing at this, but I am still standing.

You have my total admiration.

Long story short, I had three parents come to live with me for their old age and end of life. It took ten years. I hired caregiving help. Hospice came in at the appropriate times. It wasn't even close to enough. Like most from their generation, none of them wanted to live in a facility. My mom's reaction was as if i was suggesting she be given to the Humane Society or left at a curb.

As a result, I plan to be ready. Given my family genes I expect to be around another 20 years, but I will be ready. I plan to sell our homes and either rent an apartment of move into an independent living arrangement with a continuum of care facility. I even have one picked out. I have an only child, and I will not put her through what I went through. The overwhelming responsibility of being primary care giver, even with the help of aids, took away many of the happy times and memories I might have had if I could have taken proper care of them in a facility. People who go to facilities shouldn't be "dumped" and many are. A proper facility full of family, friends, and a daily family support person to make sure everything is good for the day and ready for night really benefits everyone.

A few suggestions/questions offered with good intent. You've probably thought of them all already.

Does she really need to shower every day or could you just shower her every other day and wash her up in between? Americans shower more than any other people on the planet.

Istead of dressing her in pants, what about a dress? They may not exactly be fashionable or her style, but it might make dressing easier on both of you.

Meals on wheels for you? It would just appear with the Ensure. I understand it isn't the best, but it might do.

I assume you take full advantage of the aids that hospice offers. If I remember, you get two a week for three hours each who will bathe her, feed her, or just generally be helpful. ALS has a respite program.

They sell barber/styling capes in plastic and cloth. . If you put one on her when you feed her, would it help lessen the clean up?

Have you thought of altering your routine. Some of the dresses I linked to can do double duty for day wear and sleep wear. After dinner, you bathe her and dress her in a clean night/lounging dress instead of PJs and put her to bed. When she gets up in the am, add a bra and she is all dressed and ready for the day - except for brushing her teeth and hair and a face washing or her shower days.

Some or none of this may be helpful. Your wife is so lucky to have someone so loving and giving. I am positive your wife would want you to do everything possible to help make her care easier for the both of you. Wishing you both happiness and peace.

I admire your devotion and hope that I can be as strong as you if the need is there.

for being a loving husband, Tim, that is admirable beyond my words. Thank you for being my brother, brother. When you're ready we'll talk about that which you doubt, if you're interested.

Peace to you and Sweetie, my brother.

The third verse is about the Allegheny's. I sang this with the band in DC on a radio show and found it on Youtube. For you and your rose of NC!

[video:https://www.youtube.com/watch?v=x9QYNjdjONI]

I don't know you but will think about you this Oregon morning and send warmest wishes for strength and peace during your precious caregiving.

I don't know if Sweetie is a Van Morrison fan, but his song Into the Mystic is a great comfort to me, and I offer it as a suggestion for her playlist. You might like it, too.

Peace.

Talking about how my day unfolds is cathartic. There are dozens of things I would love to add to the day. Things like taking a walk outside, playing a little guitar, catching up with friends and talking with Sweetie. It is just not meant to be. -

It is incredibly difficult not having anybody around to talk to. I have taken to talking to the telephone solicitors.

Simple gestures are much deeper than conscious thought. Being kind, empathetic or supportive fosters genuine feeling. On a less personal level, saying hello, making eye contact, acknowledging another person, listening and numerous body language cues can be the difference between a positive or negative human interaction.

I am Sweetie's voice and advocate. The pseudobulbar is particularly challenging. I have a terrible time dealing with crying, sometimes I just have to flee the scene. Psuedobulbar combined with the loss of the ability to speak makes for some confusing and stressful interactions. Is she crying from pain? Did I do something? Is she depressed? Is it just the psuedobulbar?

I am having a psuedobulbar reading you. Lots I would like to say but it just doesn't come out.

Before I came reading the OT this morning, I happened to run into this, which sort of touched me. If it's difficult to talk, there are the eyes and they talk and talk more and then talk some on top of that.

Amnesty International has apparently released a video that is designed to show what happens when refugees and Europeans look each other in the eyes. Many end up feeling love and sympathy for each other. It has been tested and proven to be true.

Just imagine we all here could look into each other's eyes for four minutes. Nobody would write a word anymore on this blog. We would just love each other ...

Thanks for unloading your daily life in here. It's kind of carthartic even for us reading it. I imagine looking in your and Sweeties eyes ...

that with all my complaining that there are people who are dealing with so much more than I am. Sometimes, in my aloneness I forget that there are so many brave and caring people "out there."

I hope that we here at c99 can be a bridge for you.

[video:https://youtu.be/jjNgn4r6SOA]

blogs when I hang out in blogs.

The political blogs I do sporadically, in a binge sort of way. But inevitably, I tire of the politics of the political blogs. Which isn't to say, of course, that the economic blogs don't have their own politics, but they're different in my experience.

All the blogs I read routinely provide links to other economic blogs. I can't think of one that doesn't, even the smallest ones, like Winterspeak - which is so small that most of the blogs consist of the writer alone - no comments and no content by others.

Yet, even this blog provides a list of other blogs the writer finds interesting.

While I plan on remaining a member of C99, and hope it flourishes, in my experience in other fields (mostly small, private schools) when small organizations don't network with other small organizations doing the same thing, they inevitably fail.

Anyway, one thing that LD has done right is provide a link at the top of his page to the Reddit Sanders page, with the words: "Visit Our Reddit Friends". I hope he expands his links for several reasons: It's nice, the left needs to stop acting like idiots and actually take the risk of networking, it works better than not taking the risks of networking.

Anyway, just my 1 cent.

If I ever get around to actually writing a diary - or whatever they're called - I plan on trying to post in several different places. But which ever place does the best at networking is the place I'll inevitably light upon, just as my favorite economic blogs provide links to interesting stuff on other peoples' blogs.

It creates ease of movement and shows a type of intellectual curiosity and honesty sorely lacking in our society.

They are doing 40 min segments of old rock&roll. I can drive alone in my car and smile and nod. On to Philadelphia! They called it, years ago.

"Evidence Based Community?"post, I linked to one of my rants posted to Daily Kos. I have decided to repost it here so that it will be part of my library of work here. It references Kossacks and the Daily Kos in the title and elsewhere, but it not so much about them as it is about evidence, empiricism, reality, facts and communication. So, I'll be posting it in a few minutes with its original title