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Wednesday, March 28, 2012

What is Art, Anyway

One of the things I've been doing to get my life back after years of caregiving is to try to get my creativity back. There have always been creative outlets. There have always been bits and pieces of stuff that I did. I was an amazing needlewoman. I tried almost every kind I'd ever heard of. And mostly I made very nice looking stuff. But you would never have known it from my house. There wasn't a quilt showing and only one, rather small, cross stitch picture. There weren't even sweaters in the house. They had all be given away. And everything else was hidden in drawers.

One of the creative outlets I spent a lot of time on in the past was digital scrapbooking. I did print out my pages, but they went into books, so they weren't ever out where I could see them.

The problem with caregiving is that in the end everything stops. You lose all of your interests. There is no time, but mostly no energy, to do anything but take care of the person who is sick. That is one thing when the caregiving is short term. You can put your life on hold for 6 months or a year, but not for a decade. If you try to do that, you stop having a life. It is one of the reasons caregivers die, frequently before the patient does.

So I really did need to get my life back. I needed to be interested in something again. I did a lot of self help books, and all of them helped a little, but then I found The Artist's Way, and everything changed. 

I'm not sure how long I've been working through the Complete Artist's Way by Julia Cameron. Months. There are three books that were bound together in a single, rather heavy, hard cover book. I'm into the third one. You are supposed to take a week for each "chapter" and there are 12 to a book. I haven't done that. Some chapters took more than a week, others less. No question that the system in that set of books has unblocked me.

But one of the first things that happened was that I started finishing things. Quilts got quilted and bound. Pillow tops that had been sitting in drawers became pillows. And I started new projects as well, and finished some of them too. If you look at my house now, there are things I made in several rooms. And more to come.

I've been spending a lot of time thinking about Art, with a capital A. And thinking of me and Art. And I'm not sure what it really is, but I am having a pretty good time experimenting with stuff.

This blog is part of the experiment. It came to me while I was writing my Morning Pages that I wanted to write something more permanent than emails and forum posts. I didn't want to write a book. I'm not ready to write books. But I could write things that were shorter. Things like blog posts.

Morning Pages are three (or more) hand written pages of stream of conscious journaling done first thing in the morning. She asks a lot of questions in the book, and I do dip into the book most days towards the end of the journaling period. She didn't intend the book to be a grief therapy book, but it ended up being that too, because those are frequently pretty hard questions. They are the easy part of The Artist's Way system. I have a lot more trouble with Artist's Dates, but I understand everyone does.

Right now, my creative outlet is working on the slide show for Joe's Memorial Service. I want it ready so it doesn't have to be thought about when the time comes. I'm enjoying working with the photos, but it is also very hard to see those happier times. I'm taking regular breaks.

Sunday, March 25, 2012

Update on Joe's Condition

I just got the call from hospice. They will be returning to take care of Joe again. I'll be signing paperwork later today.

In addition to the feeding issues from 10 days ago, it looks like he had a stroke. That might have been 10 days ago, or it might have just been a couple of days ago. We really don't know. But the doctor is pretty sure there was one, and he wants hospice back on board.

Joe is also having more serious feeding issues from what was going on 10 days ago. Then he just didn't want to eat and wasn't eating much. He has been assessed by a speech therapist and is now on pureed foods and nectar. And he is having swallowing issues.

All of these symptoms are new from the time hospice left because there were no new symptoms. The federal rules for hospice for dementia patients do not make a lot of sense. It is not unusual for dementia patients to lose hospice one or more times before they die. And that is just frustrating, not just for the family, but it turns out for the nursing staff at the nursing home. Both of Joe's regular nurses have sounded like they could not understand why hospice wasn't on board as these changes happened over the last 10 days.

Thursday, March 22, 2012

Lancaster, PA Quilt Show

Last Friday I took the bus from the Allentown Sewing Machine Outlet to the AQS quilt show in Lancaster, PA. It was the first quilt show I'd been to in 15 years or more. And I wasn't sure I could manage it, so I was a bit apprehensive. I took my walker, which has a seat, and I had a friend with me.

Turned out very well. The fact that the walker had a seat meant that when I needed to sit down right now, I could, so I never got over-strained or overtired. The quilt show was on three floors at the Lancaster Convention Center, so it was a very large one. I managed very well indeed.

The quilts were overwhelming. I didn't spend as much time with them as I should have. What I did notice was a lot more smaller quilts than in shows from a decade or two ago, and a lot more machine quilting, and much more tight, very close, machine quilting even in quilts that were not prize winners.

There were a lot more art quilts than I remember from past shows from the 80s and 90s. Fewer very traditional quilts were being shown. I'm sure a lot are being made, but this wasn't a local quilt show were all of the quilts from a particular quilt guild were going to make it to the show. This was an AQS show, and that means it attracted quilts from other parts of the country.

I enjoyed the vendors. I didn't buy much, but I enjoyed watching demos while sitting down, and enjoyed what they had. I was surprised at how few books were available. I had expected more. AQS had books, but I learned something about the group. I had taken it for granted that they were publishing leading edge books, but most of theirs were very traditional. All of the thread vendors I'm aware of, and a couple I've never heard of, were present. I did buy some thread.

There were a couple of women demonstrating rulers, and I did buy one, but not the one I had expected to buy from the person I expected to buy from. I think the only reason I didn't buy rulers from that designer was that there were too many and I could not choose. I might just buy from her over the internet instead, and one ruler at a time.

But I am not sure I want to make the kinds of traditional blocks you use rulers like that for. And what I was looking for in the book section was something quite different. I've seen books on wonky blocks and modern piecing at Amazon, but I wanted to actually see one of the books before I bought it. Amazon lets you dip in when the publisher allows it, but frequently the publisher doesn't let you see enough to really know if you want the book.

Anyway, I had fun. The next bus should be to the Hershey Quilt Show in July. I can't wait.

Monday, March 19, 2012


I guess it is synchronicity. I write a post on the Kindle Fire and the iPad 3 comes out the same day. I write a review of the book HARD CHOICES and I find that pretty soon I'm going to be making them.

Patients with vascular dementia go on long plateaus. Joe has been on one for a long time. Last Thursday it changed. They called me after he didn't eat his second meal. The one symptom of stage 7 dementia he did NOT have was a steady weight loss. But that looks like it will change. He is still eating some, but not enough. If he hasn't already lost weight, he will start doing that if this goes on.

This is day 5 of the new "normal." I won't have any real information until another week, or two. There is a care conference tomorrow afternoon, so I'll have more information then, and maybe even some idea of what they think is going on. At this point, after only 4 days, there is no way to know if this is a new plateau or just something that is going to last a few days.

Two weeks ago hospice left mainly because he wasn't losing weight. So they did all of the paperwork to leave. And in a couple of weeks they will do all of the paperwork to come back. ...[sigh]...

Thursday, March 15, 2012

Hard Coices for Loving People

Sooner or later, if you are taking care of a person with a long term terminal illness, which dementia is, you are going to be faced with end of life decisions. I suggest you take a good look at those choices as early as possible so you make them long before you need to make them. I suggest you read this book, think carefully about it, and decide what you are going to do so when the phone call comes asking you about these things, you already have the answer that you made when you had time to think it through.

In fact, maybe everyone needs to read this book and think it through early.

The book is HARD CHOICES FOR LOVING PEOPLE by Hank Dunn. You can read the book for free here

Or order a single hard copy from them (the publishers) or from If you are an organization, you can order multiple copies on a sliding price scale and the publisher will even print your organization's name on the back cover.

Hank Dunn was a hospice chaplain and he wrote the book both from the point of view of medical decisions but also from an ethical point of view. They are hard choices because they are the choices between life and death, and about letting someone go when they time comes. It clearly explains when you do certain things, including hydration and feeding tubes, and when you don't. It clearly explains when you are actually hurting the dying person when you would take it for granted that you are being kind. And armed with the truth that doctors don't realize you don't already have and rarely explain well during crisis, you can make the right choices for you.

The author does not take it for granted that he knows what the right choices for you and for that particular patient at that particular time are. He gives you the information so you can make them for yourself.

Wednesday, March 14, 2012

Reviewing at Amazon

I've been reviewing books, and other things, at since February 2003. Possibly earlier, but that was the earliest review Amazon had listed. I'm not one of their top reviewers. I think you can only be a top reviewer if you aren't actually reading the books you review. You have to have done too many reviews every day. But some of the time, at least, people find my reviews useful.

The most recent ones include
  • Fair Game
  • Celebrity in Death
  • Perfect Blood
I've been doing a lot of hard cover, from the library, fiction reading. All books I won't buy for my Kindle at this time because they are too expensive. It is interesting that all three of them have Kindle editions at $12.99 and not the $14.99 that a lot of publishers went to about a year ago. I think some publishers are rethinking pricing Kindle editions as high as hard cover books because a lot of us voted with our feet when the prices went up.

My library will buy almost anything I ask for. I'm careful that I mostly ask for brand new fiction that I think others will read as well during the book's first year. I do notice that the books I ask for aren't sitting on the New Book shelves most of the first few months, so I guess I'm doing a good enough job.

I'm also getting a lot of free and very low cost Kindle books.  I'm trying out authors that I've never read, and in a few cases I'm happy to have found them.

Tuesday, March 13, 2012


I was going to write this post yesterday but my Internet was down for several hours and I didn't get to it. But the pictures were yesterday's pictures. Spring is just starting here in semi-rural Pennsylvania. We had a very mild Winter, and we are getting an early Spring.

 The crocus are out and they are blooming. My daffodils are starting to show buds, but I've seen some already in bloom in other people's yards in Macungie Borough.
But these daffodils are just beginning to get their buds. Pretty soon my front yard will be full of blooming bulbs. It doesn't look like much the rest of the year, but it is very pretty in the Spring.

We planted a bunch of stuff last fall, and depending on what comes up, I might actually have a garden all Summer. I'm looking forward to seeing what happens.

Saturday, March 10, 2012

Not feeling well

I don't know what was going on yesterday. I just was feeling tired, and cold, all day. I had a low grate temperature. About 1 1/2 degrees higher than my normal on that thermometer. I had chills. And I was just so tired I went back to bed twice. I slept once but not the second time. I found myself dozing on the couch more than once during the day as well.

I'm feeling a lot more normal today. And I made myself stay in bed to a more reasonable time. It is possible that I'm just not getting enough sleep. It is possible that my allergies or my asthma is acting up. No question that the asthma is a problem because my doctor changed one of my prescriptions for two weeks upping the cortisone. It is possible it is the upped cortisone causing problems.

There is also the whole problem of being old. Those of us who are reasonably healthy and not frail HATE to admit we are old. There needs to be another word for us. But there is also no question that what happened yesterday would have been unlikely in a 20 year old, or a 40 year old, or even a 60 year old woman.

Today I'm getting on with life. My daughter and grandson are coming to visit. I'm going out food shopping. I'm blogging.

More later. Take care.

Wednesday, March 7, 2012

My Kindle Fire

I am one of the people who bought a Kindle Fire last November and I thought this might be a good place to put a sort of review.

I love it and use it almost every day, and use it enough that it needs to be recharged almost every day as well.

It isn't perfect. I can think of a bunch of ways to make it better. I'd move the on/off switch from the bottom to the top where it was in my old Kindle 2. I've turned it off by accident more than once just leaning it against my body if I've been using it a lot.

It does most things pretty well. I'm enjoying the games in addition to the reading. It is possible to actually see tables and photos, to double click them and then make them bigger. If the publisher put in reasonable resolution, you can really drill in, but it is the publisher and not the Kindle that controls that ability.

I use a stylus. One friend suggested that I try one, and for things like games I like it a lot. It also makes typing extremely easy. I don't do a lot of typing, and I'm not doing e-mail on my Kindle at this time, but you can put things in search boxes which I find useful.

Whether or not the Web works on a Kindle depends on whether or not the owner of the site or the blog has allowed for hand held devices. I have done that with this blog, for example.

A lot of people see the iPad and the Fire in competition, but I don't. iPads do things Fires don't do. Fires are a lot cheaper and more entry level. Some of the things iPads do are things I don't want to do. There is plenty of room for both of them in the marketplace.

Monday, March 5, 2012

Caregiving Paperwork

When you are beginning to take care of someone with a serious and chronic disease you get good advice to get some paperwork out of the way. I call this the first round of paperwork, and frankly everyone over the age of 18 needs to do some of it -- wills and medical advocate paperwork -- and everyone over the age of 60 probably should get durable powers of attorney done as well.

It is a good idea to take the house title paperwork into the attorney at this point as well. Make sure it is set up so the house will transfer outside of the will in case one of you dies. Again, every state is different.

If you are over 18 you need a will. Sounds silly at the younger ages, but you might as well get a simple one done, just because. If you are over 18 you also need to do whatever your particular state requires for medical advocacy, because if you can't make decisions because you are too sick to do it, someone has to. What the state wants is different in every state so be careful about Internet paperwork. Frankly this is a good time to make contact with an attorney because you just might need one one of these days.

If you are over 60 and married you need to exchange durable powers of attorney so that whichever one of you is healthy can take care of the other, and also take care of family business. If someone has dementia the well partner needs to designate someone other than the sick partner as advocate for medical issues as well as give them power of attorney. Obviously you need to pick someone you trust not to abuse the power you are giving them.

And while you are talking to the attorney, find out what the Medicaid requirements are in your state. The worst case is you might need it at some point. If you don't need it, then asking these questions won't affect you either way. Again, every state is slightly different and you want to be set up correctly for your particular state just in case.

So that is the first round. There is a second. And frequently no one will tell you about that second round. Especially with dementia, but probably with other diseases as well, the well partner needs to get legal status to talk to all doctors, insurance companies and financial companies. This includes Medicare and Social Security. Some of those entities will have their own paperwork and won't accept the powers of attorney and medical advocate paperwork. Some will just need a copy of those papers to make changes. But in ALL CASES if you do the paperwork while the sick partner can still sign his/her name everything will be easier.

This is the time to change the ownership of all utility contracts. Most utility companies will accept requests from the contract owner or his/her spouse, but occasionally one won't. And that can drive you nuts. It happened to me at the worst time.

If there is insurance it would be helpful if the ownership of the policies was either in joint custody or in the name of the well partner. This is a just in case situation that may or may not be meaningful at a later date, but won't hurt anything if it is not meaningful.

Saturday, March 3, 2012

The RIME Quilt

Back in the days before the Internet, there were commercial nets and echoed nets. RIME was one of the echoed nets you accessed through a local bulletin board. Those were generally run by computer enthusiasts and consisted of forums and conferences about all kinds of interests. There was a Stitching Conference on RIME and we decided to make friendship quilts. We each chose a pattern for ourselves, stitched up some blocks and sent them around round robin to be signed.

The blocks were sent around in 1994 and 1995. There was a hang up at one point. One of the participants held onto several of the packages and didn't send them on. But another recovered all of them and in the end my package came home to me.

RIME ended when the Internet became available. I lost touch with the other members. The quilt got set aside for quite a while, but a year or two later I did put most of it together. Most, but not all. Once again it got set aside, this time for several years.

Life went on. I changed jobs once or twice and then we retired and moved from California to Pennsylvania. I picked the quilt up again and found the pieces for the borders and finally put the quilt together and began to quilt it. I decided on hand quilting. At that point every quilt I'd done had been hand quilted and had taken years to decades to get finished. This was the last one. This is not an easy quilt to hand quilt. There are a lot of seam lines. It got put aside once again as Joe's illness got worse.

About a month ago I took it out again. I finished quilting the main part of the quilt. I figured out what to do about the borders and quilted those as well. And finally I got the binding on and finished that just yesterday.

So here it is. Another finished project. And that feels very good. But somehow, I think this is the last of the hand quilted quilts.

By the way. If anyone from RIME is out there, I'd love to hear from you.

Friday, March 2, 2012

Morning Pages

I've been working through THE ARTIST'S WAY system by Julia Cameron for at least 6 months now. I didn't start with THE ARTIST'S WAY itself, but with one of her other books. It is an amazing system for unblocking creativity.

I've journaled for decades, mostly on computer, but I fought the idea of 3 hand written pages first thing in the morning for years. About 6 months ago I decided to just give it a try. I'm still not sure that a computer written journal wouldn't work for me. My journaling style didn't change when I picked up a pen, or when I used a keyboard. But what did change was length. Inevitably you will run out of things to say. It is hard to tell if you have written "enough" when you are using a computer. Is it three pages? More? Less?

I found that if I made myself keep going, I kept going to that third page and generally past it.

Morning Pages aren't the same as writing a blog. You aren't writing for anyone but yourself. In some places Julia Cameron describes it as a brain dump. For three pages you write about every silly thing that is on your mind. You write about the things that worry you and the things that excite you. You write about what you are going to make for supper tomorrow if that is what is on your mind. And at some point, you find yourself writing about the quilt you want to make, or the beading you want to do, or the blog you want to start. And you find yourself making that quilt, doing that beading or starting that blog.

In the last couple of days I've seen THE ARTIST'S WAY mentioned on two blogs that I read regularly. One was a beading blog. I don't do beading, but the author of that blog does, and she unblocked the kind of beading she does using THE ARTIST'S WAY. The other blog is by an author of one of those "how to make money writing blogs" systems. Mostly I don't read that kind of thing but every once in a while he talks about organization or some other subject I enjoy so I look in occasionally. And this week, I found his THE ARTIST'S WAY post which was so much like the beader's post that I was a bit amazed.

Because what they had found is what I have found. During the last 6 months I've also bought a sewing machine, and began trying to learn Art Quilting. I've pulled projects out of the closet and drawers and finished them up. There are three pillows on my bed that sat unfinished for 15 to 20 years. And I finished a quilt this morning. Binding done, and only a little hand sewing to do, that was started in 1994.

I thought about wanting to do some writing and realized I could do it in a blog in Morning Pages less than two weeks ago.

There are other parts to her system, but I am beginning to think that everyone should try Morning Pages.