Tuesday, September 29, 2009
Our house is surrounded by trees, as you can see by the photo above. Very, very large trees. Most of them are pines and white oaks. A few maples, alders and other varieties are sprinkled in.
Apparently this year we're experiencing a bumper crop of acorns and pine cones. Our yard is now liberally sprinkled with lots and lots of pine cones and acorns. Very little seed is being eaten from our bird feeders as all the critters who frequent them are off enjoying the natural fruits of the fall.
Yesterday afternoon, so many acorns were dropping, it sounded like the sky was falling. The acorns would ping off the roof, sounding like gunshot if you were sitting in the living room (we don't have an attic to muffle any of the sound). Out on the patio and under the gazebo, Skip and the pups were constantly assaulted by loud pings and bouncing cones and acorns. They so freaked out Ruby, who is prone to chickenshit-tishness, she eventually begged to go in the house!
Saturday, September 26, 2009
This caused me to wonder if anyone had posted a comment on any of my Caregiver Aids posts long after I'd posted the item. I checked them out and, lo and behold, there were comments that got posted months after the originals. I don't employ comment moderation nor did I have any kind of notification set up so I'd know when a comment was posted, so I'd never been aware of these comments until the other day.
This morning, I went to the Settings > Comments section of Blogger and found there's a setting that is almost exactly what I'd have requested if given my druthers. I'd have requested any comment posted to an entry more than 7 days after I posted it could be posted automatically but I'd get an email to alert me to it. All comments posted within the 7 days would just act as they do today, no notification to me, no moderation required from me. Since this wasn't available, I selected comment moderation only when a comment is more than 7 days older than the post. And, I'll also get an email notification about it. I'd rather not have the moderation in place, but the only other option would have had me get an email about every comment posted. This would result in enough emails that I'd probably miss notification about a comment on an older post.
I can't speak about any of the other blogging applications out there, but I must give kudos to Blogger for having this kind of functionality in place. I love comments and I'd love to know that an older post had a comment so I could read it and follow-up.
Monday, September 21, 2009
I worry what will happen to Skip if something happens to me. Of course, there's the big "something," that is, I die unexpectedly. I don't really worry about that much. After all, I've got life insurance to cover her financially. And, honestly, I won't be around to have to deal with the aftermath.
I worry more about smaller somethings. Primarily, if I get sick and end up incapacitated for a short while. Or if I lose my job. Essentially, I worry about situations where my ability to play the roles of primary caregiver and provider are impacted.
In these contexts, I worry most about an illness that sends me to the hospital that leaves Skip high and dry temporarily. I worry how Skip will handle this. Her resiliency has been affected over the years, and she has a hard time handling change. She's also intensely private. How will she be if I'm unable to care for her for a while and we need to get in others to take care of all the tasks of daily living? I know she'll deal with it because she'll have to, but it will be very hard for her.
I worry because we don't have an automatic "Plan B" to put into place if something does happen to me. Skip will be freaked out because of whatever's happened to me and won't be in a good position to figure out how to take care of herself. I know she won't want to talk about it, but she and I should put together a list of resources that can be called upon in a pinch ... friends, family, caregivers, church pastoral care. Then, there'll be a plan to set in motion if I'm down for the count for a bit.
I think we'll start that conversation tonight ... with Plan B documented, I'll worry less.
Thursday, September 17, 2009
Apparently, Hilary was able-bodied and active as a youth. She was diagnosed with Reflex Sympathetic Dystrophy as a teenager. She is presently able to move only her head, eyes and mouth. She navigates her sailboat through three straws, using a sip and puff system to adjust sails and tiller.
I have never sailed myself, but whenever you see folks sailing on tv or in the movies, it seems to involve a lot of scrambling around the boat to "trim the sails," "swing the boom," steer and do all sorts of physical things. Envisioning someone who cannot move being able to take in all that is around her on the sea, understanding the wind to catch it in her sails and control her boat, getting safely from Point A to Point B, seems remarkable, to say the least.
Hilary says "when you live in a wheelchair or bed 24 hours a day, being in a sailboat is like flying." And, "sailing gives me a sense of freedom that I never thought would be possible again. Sailing quite literally saved my life."
Why did she set the goal of sailing around the Isles? On her site, her goals for the circumnavigation are stated as:
- Raise awareness for disabled sailing
- Show that disabled people can live exciting and challenging lives
- Challenge people to rethink their views on disability
- Encourage everyone to live their dreams
- Raise money for Hilary’s charity, ‘Hilary’s Dream Trust’
Roz Savage's path was inspiring to me in that she looked at her present state, asked if this was what she wanted in her life, and took action when her answer was "no."
Hilary inspires me in a different way. She is a woman who has managed to accomplish much in spite of the obvious physical challenges. In the world today, I think we write off disabled folks and don't expect them to contribute much to society. Hilary wants to shake up those perceptions, showing that you can achieve much despite physical limitations. Hilary says to me ... shake off those limiting beliefs you carry around in your head. Question your own assumptions about yourself and what you can accomplish.
My thanks to Herrad, an inspiring woman in her own right, for turning me on to Hilary Lister.
Monday, September 14, 2009
This question came up because I started doing some digging into the health coverage that's available in Massachusetts for the disabled. Massachusetts is the only state in the US, to my knowledge, that requires every citizen to have health coverage, and they have a lot of state-sponsored options to help individuals get access to coverage. Anyone who is disabled can have coverage through a plan called CommonHealth.
I started looking into the provisions of CommonHealth last week to see if Skip should change to it. One amazing thing is, if you have CommonHealth, you're eligible for 40 hours of paid Personal Care Attendant services per week! Yippee! Visions of someone to help out with some of the "heavy lifting" danced through my head.
The plan seemed fairly complicated if you're eligible for Medicare. It was hard to tell what you needed to keep and it sounded like you needed to get drug coverage through Medicare Part D, which would be a viable option. But, nowhere could I get the details on premiums.
Yesterday, I finally found a highly legalistic, technical document that outlined premiums. Premiums are indexed relative to the "family unit's" household income in relation to the Federal Poverty Level. If your family's income is below the FPL, your coverage is free. The higher your income in relation to the FPL (an unbelievably low number), the higher your premium. So, if Skip counted only her income, CommonHealth would be close to free. Add me in and it rockets through the roof.
I need to get more details before I can truly understand how CommonHealth coverage works in coordination with Medicare. I spent 30 minutes on hold with the Massachusetts Health plan folks last week, never getting through to a live operator. I'll try again this week so I can speak with someone concerning how the plans work together and find out what the premiums really are.
This is a troubling quandary. I can understand the logic behind setting up premiums in a way that reflects ability to pay. But, with the stroke of a pen on a divorce decree, we could establish a different legal relationship that would dramatically change the income used to determine premiums. And, it would alter the legal protections we automatically receive (albeit only at the state level) due to our married status. (And, I'm just starting to get used to introducing Skip as my wife instead of my partner!)
I'm sure we won't get divorced, but I'm made crazy contemplating Skip's medical options and costs if we did. What a terrible dilemma for couples like us.
Saturday, September 12, 2009
When this old world starts a getting me down
And people are just too much for me to face
I'll climb way up to the top of the stairs
And all my cares just drift right into space
On the roof, it's peaceful as can be
And there the world below don't bother me, no, no
So when I come home feeling tired and beat
I'll go up where the air is fresh and sweet
I'll get far away from the hustling crowd
And all the rat-race noise down in the street
On the roof, that's the only place I know
Look at the city, baby
Where you just have to wish to make it so
Let's go up on the roof
And at night the stars they put on a show for free
And, darling, you can share it all with me
That's what I said
Keep on telling you
That right smack dab in the middle of town
I found a paradise that's troubleproof
And if this old world starts a getting you down
There's room enough for two
Up on the roof...
As a teenager, I'd occasionally sneak out of the house at night and meet up with friends. One warm evening, I was out with two friends, David and Annie. It must have been 1 or 2 in the morning, and we were walking down the center of the street that ran by David's house. David was very much into music, so he had a radio with him. Laura Nyro's version of Up on the Roof came on, and we all sat down, there in the middle of the road, to listen. A wonderful and special moment. Bittersweet now as David and Annie are both dead. Annie hung herself about 25 years ago and David died of AIDS in the early 90s. They were both very special people.
And who wouldn't want a place at the top of the stairs where it's peaceful as can be and all your cares drift right into space?
Friday, September 4, 2009
She had been a management consultant in London and decided in her mid-thirties there had to be more to life than "four grey walls," as it says on her site. Apparently, per CNN, she wrote two obituaries at the time, one describing her life if she stayed on doing what she'd been doing and another as if she'd taken a jump and followed her dreams, doing what she'd always wanted to do. From there, she made a break with her old life and pursued adventure.
She ended up rowing because it achieved a number of objectives: it was environmentally friendly, solo (to test her capabilities without relying on someone else), challenging (so she could grow as a person), unusual (so she could make a living writing and talking about it) and physical.
Right now, on this leg, she's on day 104 at sea, has traveled more than 3,000 miles and rowed more than 1.2 million oar strokes.
I find her story inspiring. She had thoughts of "is this all there is to life?" She used those thoughts and her two obituaries as a way to trigger a new path. Obviously, the path she chose to find more meaning in her life was quite extreme, but I can learn from it to enhance my own life.
On the "Inspiration" page of her website, it recounts sample themes from her speaking engagements. To (almost) quote (for some reason, I couldn't highlight the text on her page to copy and paste here), she says:
- Make the connection between present action and future outcome. If you repeat the same actions 365 times, will you be where you want to be in a year's time?
- No matter how big your goal, you can get there if you make a plan and execute it with discipline, determination and dedication. One stroke at a time
- Don't waste mental energy asking yourself if you can do something. You won't know until you try. Just do it - you may surprise yourself.
I have plans for our future, but I can honestly say today's actions are not always consistent with achieving them. What I take from this is you can set big goals, even ones that might seem crazy from where you're sitting today. But, once you set those goals, you need to execute on them and make your actions every day help you achieve them.
Time to get a little crazy and start thinking "out of the box" I've got myself in. I need to start imagining all sorts of different futures to see which one is the one worth driving for. A purpose-driven life is a far more appealing life than the static, routinized one I find myself in today.
Tuesday, September 1, 2009
I don't dread it for all the usual reasons one might dread the dentist, primarily the fear of pain. It's because it's so difficult to get Skip in and out of the dentist chair. There was a time when transferring from wheelchair to dentist chair wasn't too difficult, that is no longer the case. Skip's legs are completely dead and they don't even have much spasticity to help with standing. I don't do much transferring or lifting of Skip anymore and I suspect I'm not as strong as I once was as a result; and I'm out of practice. Plus, the dentist's work rooms are bloody small, so even getting the chair in a position from which to make the transfer is not an easy undertaking.
Unfortunately, this is not a unique situation when it comes to doctors' offices and other medical facilities. We've encountered ...
Gynecologists with examining tables that aren't height-adjustable. When you find a height-adjustable table, no one helps with the transferring or preparation for the exam. EKG tests administered on a high gurney with no one to help transfer a wheelchair user. Doctors' examining rooms with fixed tables that cannot be lowered, so Skip cannot be examined in them, but must remain in her chair for the appointment. Examining rooms that are so tiny a wheelchair, doctor and guest can't all fit. MRI machines that require you to lie on a long, narrow device with no handholds and only a helpful technician to help with a dangerous and dicey transfer.
Even if you call ahead to find out more about the setup and to ensure there will be help in transferring for the test, it's typical to find that the technician has not the slightest advance knowledge of the need for help and thus has to scrounge around for burly aides to help with transfers.
I could go on, but I'm sure everyone gets the point.
This situation makes my blood boil. I am not shy about providing pointed commentary concerning the absurdity of the situation when we encounter such barriers. But, I try to remember that the technician delivering the test or doctor giving the exam are not the individuals who determined the room's setup, so I don't get too cranky.
I'm currently at wit's end on this. We're now at the point of Skip's disability and my strength/transferring ability that some tests and examinations will no longer be possible.
Any good ideas on ways to find dentist offices that have relatively accessible work rooms? Unfortunately, if you look for handicapped accessible dentists on the internet, you find offices that are accessible purely from the perspective of building access, but not the finer points of the work room where the dentist does his/her work.