The Sky is Falling! The Sky is Falling!

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!

Interesting Factoid About Comments

I noticed that I was on the verge of posting my 100th post (in fact, this is the 100th), and I was thinking about writing a milestone post. I started looking at the stats concerning number of users and how people came to the site (directly, via another site or through a search engine). For those who came via search engine, my posts about our modified Honda Element Xwav (aka the Toaster) and our Surehands lift system definitely generated the most visits. (Honestly, I'm not surprised about this because I searched the web about both of these items before purchasing to find independent reviews about them and was unsuccessful. I don't think there's that much out there about these aids.)

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.

Sometimes I Worry

I wasn't much of a worrier in years gone by. I always had a pretty positive outlook on life and expected good things to happen. Unfortunately, while plenty of good things have happened and continue to do so, there's a lot of bad that's occurred in my life as well. Now, I am not so positive in my outlook ... sometimes I worry.

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.

Hilary Lister

After I wrote my post recently about Roz Savage, Herrad from Access Denied, told me about Hilary Lister, another inspiring woman who has taken to the seas. Hilary is a quadriplegic who recently sailed around the British Isles in a series of short sails. You can find out more about her and read her blog at her website.

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.

Do We Have to Get Divorced?

I'm sure this is a question heterosexual couples in the same situation have to ask as well. However, I'm particularly sensitive to it as 1) it's only been legal for same sex couples to marry in Massachusetts for just over 5 years, 2) we're only married in Massachusetts, not at the Federal level (talk about screwing up your tax situation), so we really don't reap all the benefits possible from our married status and 3) we're officially not married in most states in the US and most countries around the world.

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.

Up on the Roof

I was driving to my Weight Watchers meeting this morning, when my iPod served up Laura Nyro singing "Up on the Roof." It triggered a sweet memory and gave me a bit of a yearning for my own spot to run away to.

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?

Roz Savage

Have you heard of Roz Savage? I hadn't until the other day I saw in a list of CNN articles: "The woman who's rowing across the Pacific." That caught my attention and I checked it out. Which prompted me to visit her site, rozsavage.com. She's already crossed the Atlantic alone in a rowboat. Now, she's tackling the Pacific in three separate stages; stage two is almost complete.

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.

Why are Medical Facilities so Inaccessible?

Skip has asked me a few times to get our dentist appointments scheduled as our cleanings are overdue. (Skip does do most of the scheduling/phone calling, but I handle dentist appointments due to complexities with my work meeting calendar.) I keep not getting around to it, which we were both chalking up to my tendency to procrastinate. But I have now realized, when the need to call and make the appointment flitted through my brain, that I dread going, so I keep putting off the call.

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.

Way Back When

As I mentioned in yesterday's post about Facebook, we had dinner last night with an old friend of mine I hadn't seen in 30 years or so. Her parents are still alive and live in the town we both grew up in (where I still live); she was here visiting them this week.

She became a Mormon when she was 20. She married another one of my friends, who was brought up in a Mormon family. They moved to Salt Lake City, had a couple of kids, then her husband died about 20 years ago. She's lived in SLC as a single mom with kids ever since (one daughter is married with a baby, living near San Francisco, the other still lives at home with her mom).

So, we caught up on 30 years of history. We talked and talked and talked and were practically the last diners in the restaurant when we left at 10pm (way past my usual time out on a school night!).

One interesting thing I noticed during our conversation were some of the observations she had of me and my family from the time we were hanging around together back in the 70s.

My version of the early 70s: I started getting high on pot when I was 13, in 1969. I then proceeded to spend as much of my time high as possible for the next few years. I hung around with a group of about 10-12 people that a teacher in our high school dubbed "the Party People." I cut class, was regularly suspended, and eventually my parents sent me to boarding school for my last 2 years of high school in an attempt to get me back on track academically. Not surprisingly, my parents and I had a difficult relationship during this time, especially with my father. He and I had angry battles at the dinner table often (in memory, it seems like every night).

My friend's comments about that period: my parents were cool and very laid-back. I had a good relationship with them, the best of all her friends with their respective parents. She was impressed there was no tv in our house (the tv broke when I was about 9 and my parents didn't buy one again until I was in college).

I get along wonderfully with my parents now. I see them every two weeks (they live about 2 hours from here) for a social visit and to help with bill paying, balancing the check book and the like. They are wonderfully supportive of Skip's and my relationship. They are big fans of me, for which I feel quite lucky, especially where things were not so great between us in earlier years.

My friends comments got me to thinking about my relationship with my parents during my teens: was it really as bad as I remember? I suspect not. Sure, when I got suspended or got caught smoking dope, there'd be a confrontation about that, probably multiple confrontations. And, my father and I argued at dinner pretty regularly. But, I also remember lots of good times in our everyday lives. My father always had projects going and I often helped him out (especially when I was the last kid left at home, being the youngest with 2 siblings off at college). One weekend, he and I planted 2500 Christmas and fruit trees together (no, that is not a typo, it was 2500 seedlings). He had a huge garden and each July we'd have a big strawberry jam-making session with bread and butter pickle canning later in the summer. My parents were always welcoming to my friends who came to visit.

Interesting how an evening's conversation can supply new information and perspective to help shine a different light on one's personal history. The memories haven't changed, but my emphasis on one side of the story has shifted a bit as a result.

Old Friends

I joined Facebook in January or February of this year. I had always thought it was a tool focused more on the social needs of the young, so hadn't paid it much attention. Then I read an article on slate.com that went through all the reasons why you should join FB and effectively debunked all the preconceived notions I had about it. I thought then I'd give it a try.

Well, I'm glad I did join it. I have reconnected with old friends from high school and college as well as friends from even earlier in my youth. It's helped me find people whose whereabouts I did not know, so without a tool like FB, I'd probably never have found them.

It also gives an easy way to keep up with work colleagues I consider friends and friends from prior jobs. I found out an old friend had adopted a second child, saw baby pictures from a work colleague's new addition right away and got to see some nieces and nephews all grown up (that I haven't seen in person in a decade).

With MS in our lives, we have become increasingly isolated over the years. We're quite the homebodies and don't get out all that often. And, I must confess I'm not the best at keeping up my side of friendships. FB gives me some connections to friends, both old and new, that would be much harder to handle if done entirely by email, phone and in-person visits.

The best thing to come out of FB to date is a connection with a friends from my high school days whom I haven't seen in over 30 years. She lives in Salt Lake City now but is now back in Massachusetts to visit her parents and siblings who are still here in this area. (Did I mention before that I live in the house I grew up in, so I am still here, too!) Tonight, we are taking her out to dinner. I am so excited at the prospect of reconnecting with her!

"Pain is So Wearing"

Skip said this to me the other evening. It was a simple comment, but it helped drive home for me the impact of pain felt day in and day out. It just sucks the life out of you.

Skip's having some skin breakdown, probably prompted by an inability to use our regular cleaning routines in Maine on vacation and the recent hot, sticky weather we've had. We do have air conditioning, but Skip spends a good amount of time outside each day so is feeling the heat at times. We've had a wound nurse in to evaluate and have a game plan to correct the problem, but there's pain while everything is healing.

I am a bit worried about her skin. This is the worst breakdown she's experienced, and I know how easily skin problems can escalate into major problems. So, we're keeping a very close eye it.

But, the pain is the biggest concern I have now; the discomfort she feels pretty much all the time. I can't fix it. I can keep her skin clean and apply salves and give her Tylenol, but that's it. It's frustrating that there's nothing more I can do. It creates a helpless feeling for me that's different from dealing with the losses of physical capability. For those, I've been able to apply problem-solving capabilities to figure out how to manage the new reality. Here, all I want to do is stop the pain, but with very limited success.

Do others feel that pain is a different animal from other MS issues?

Care: Maintenance vs. Enhancement

I've been thinking about this post and what I'd say here off and on all week. In fact, that's why I haven't posted since the 10th, because I'm trying to figure out what to say on this particular subject.

At first, I was going to write about the need for the caregiver to care for herself. But, if you've ever prowled around any web sites about caregiving or read any books about it, they all touch on this subject and I don't have anything new to say about it. In fact, I recently read a book on caregiving, A Family Caregiver Speaks Up, and Suzanne Mintz, the author, had an unbelievably dead-on comment about why caregivers need to take care of themselves that pretty much says it all from my perspective:

Your own good health must be preserved if you are going to go the distance as a family caregiver. Your own good health is the best present you can give your loved one, and yourself.

Unfortunately, I'm not so hot at taking care of myself. I'm 53, deeply entrenched in middle age, and I've got some of my own health issues to deal with. But, I try to ignore them as best I can. Honestly, though, this isn't because I'm a caregiver to Skip and don't have time for myself. I've never been much for taking care of myself, as in eating healfully, getting plenty of exercise and the like.

This brings us to the title of this post: maintenance vs. enhancement. Right now, I'm maintaining my own self and maintaining Skip's physical self. I take care of her medications, help with all the tasks of daily living (you know the drill), prepare meals, and so on. I do all these for myself as well. But, neither of us is looking at improving or enhancing our physical beings.

This is where we need to take action. We need to move from just maintenance into enhancement. Unfortunately, change is hard. And Skip is not an embracer of change. She says with great frequency, "I hate change," and means it. Change has not been her friend, after all, since it usually means some other MS loss. She won't resist change, though, if I push for it.

What would I like to change in order to enhance our lives? I'd say the two key items are: healthy eating and exercise.

All my life I've been fat (this is a descriptive word, not an epithet, in my dictionary). As a kid, my parents tried to get me to lose weight, but always without success. When I was in high school, they stopped trying (at the request of a counselor I had at the time). In college, I began reading about the fat liberation movement (this was in the mid-70s, when there were many movements afoot), and began to look at size discrimination as an issue of society rather than an issue of my size. I didn't believe I needed to change, society needed to learn to accept me.

Well, this was all well and good until I started to get older and realized that I was using fat acceptance as license for me to ignore the need for healthy living. Something triggered inside me, though I'm not sure what. The pain of staying the same suddenly got worse than the pain of making changes. With a friend, I joined Weight Watchers, completely changed my eating habits, began exercising and, over the course of 2 years, dropped 100 pounds. Unfortunately, I've gained 2/3rds back.

So, how to trigger change? How to shake myself out of my settled-in ways and embrace new habits? This is my current struggle, and, as yet, I don't have any answers.

Another Lovely Early Evening

I don't know if this happens to you, but when I plan to recreate a wonderful time that happened spontaneously, it often doesn't work out as well. Fortunately, recreating our Friday early evening on Sunday evening worked out just beautifully.

Skip has a new physical therapist, who was coming at 4pm on Sunday to show us some range of motion exercises for Skip's shoulders. I suggested we head out to the patio as soon as she was done. Skip thought it was a great idea.

It was another unseasonably cool day here yesterday, so perfect for sitting outside. In fact, we kept the doors open all day and the a/c never came on as the outside temps were so low (70ish F).

We got outside around 5, Skip had a few cigars (small ones), the pups lazed at our feet on their big bed and I read aloud from Harold Kushner's book. Around 7, we all trooped back in the house and I made a simple dinner of grilled chicken thighs, garlic ciabatta bread and salad.

Great conclusion to a wonderful weekend.

Caregiver Aids #10: Support Groups

Don't we all want to be in the company of others who understand deeply what we're going through? Who "get it" because they've been there too? And, specifically for caregivers ... To spend time with others who, like you, have had to live through the diagnosis, progression and challenges of life with an MSer, an MSer who is spouse, child, parent or friend?

I've been part of an MS Caregivers Support Group for ~3 years. It meets monthly, and I make a point of going unless I have an unavoidable conflict. There are usually about 4-5 caregivers and a facilitator, though last Thursday's meeting had 8 caregivers in attendance.

The group is funded by the National MS Society who pays for the facilitator's time. He is a psychologist who is part of the group of practitioners that participates in the weekly MS Clinic I wrote about last month. I had heard of this group while in the waiting room on one visit or another, but it actually took me years to decide to find out more about the group and start attending. I think the trigger for me was finally acknowledging that I was becoming overwhelmed and really needed others to talk with who were facing similar issues in their lives.


During last Thursday's discussion, one of the caregivers mentioned that she really had wanted to come that evening because she knew we would understand what she's going through; that level of understanding was absent in her interactions with others who have never been caregivers.

That's how I feel about the group. Skip and I have understanding and supportive friends whose company and friendship we need in our lives. But there's nothing like the understanding you get from someone who is another MS caregiver. It's great to be able to meet with the group, do a roundtable of "checking in" and be able to talk about your current state in life, hear what others are going through, and have a free flow of reactions and dialogue based on whatever we each bring to the table that day.

I wondered how many caregiver support groups, especially those that are for MS specifically, exist in the US. I went to the NMSS site and drilled down from there to the new england chapter site. After about 8 or 10 clicks, I found two support groups in the greater boston area, including the one I attend. I wondered if other regional sites contained such info. I searched in California, trying out the LA and San Francisco area chapters, then the Connecticutt chapter. I found stuff for caregivers, but no support groups specifically in any of those three sites. Perhaps a direct call to a specific chapter could yield information.

On the national NMSS site, in the section for friends and family, the sidebar navigation included links to some national caregiver sites. I went over to two of them, the Well Spouse Association and Caregiver.com. The latter is totally commercial (IMO) and looked like it was set up to sell a particular book and seminars to support the vision of caregiving outlined in that book (the seminars had a modest cost for enrollment). The Well Spouse Association is a foundation established by Maggie Strong, who wrote Mainstay, about her experiences as a well spouse to her husband with MS. This group has support groups all around the country that are sponsored by volunteers. It listed a couple of contacts in Massachusetts. There are definitely possibilities out there to research for support groups, especially if you live in a major metropolitan area in the US. The WSA-sponsored groups, though, won't specifically concentrate on MS.

A Lovely Early Evening

Today was a quiet work day. Lots of folks on vacation, not a lot of email traffic, no big issues needing fast resolution. I stopped right about 5pm and went into the living room to begin the weekend. It had been a beautiful, cool day, weather-wise, and I thought Skip might want to go out for a cigar, so I asked if she'd like to go out. She was surprised and delighted at the offer.

I grabbed her cigars and paraphenalia (lighter, cutter, ashtray) and we headed out to the patio. We have a big dog bed for the pups to use on the patio and I set it up at Skip's feet. I got her cigar lit and the dogs and I settled in with her for a bit of relaxation.

We sat under the gazebo enjoying the time together. Lovely temp (well, I thought it was a bit cool, but it was great for Skip). Birds chirping, red squirrel nearby scolding. We live in a quiet neighborhood, so not much noise from the street or nearby houses to intrude.

During vacation, I'd started reading a new book that I thought Skip would enjoy as well, Harold Kushner's Overcoming Life's Disappointments. I was reading it aloud to her at bedtime on vacation but we hadn't yet finished it. While we sat on the patio, I read her another chapter. I enjoy reading aloud, I love Harold Kushner books and this book is definitely one with plenty of interesting content for both of us.

We only sat out for an hour or so, but it was lovely and relaxing. A wonderful way to start the weekend.

Cranky Analysis: Using Humor

It's been a while since I took a look at the American Psychological Association's web page on Controlling Anger Before it Controls You. There are still a couple of strategies left. Today, I'll look at the use of humor ...

Using Humor

"Silly humor" can help defuse rage in a number of ways. For one thing, it can help you get a more balanced perspective. When you get angry and call someone a name or refer to them in some imaginative phrase, stop and picture what that word would literally look like. If you're at work and you think of a coworker as a "dirtbag" or a "single-cell life form," for example, picture a large bag full of dirt (or an amoeba) sitting at your colleague's desk, talking on the phone, going to meetings. Do this whenever a name comes into your head about another person. If you can, draw a picture of what the actual thing might look like. This will take a lot of the edge off your fury; and humor can always be relied on to help unknot a tense situation.

The underlying message of highly angry people, Dr. Deffenbacher says, is "things oughta go my way!" Angry people tend to feel that they are morally right, that any blocking or changing of their plans is an unbearable indignity and that they should NOT have to suffer this way. Maybe other people do, but not them!

When you feel that urge, he suggests, picture yourself as a god or goddess, a supreme ruler, who owns the streets and stores and office space, striding alone and having your way in all situations while others defer to you. The more detail you can get into your imaginary scenes, the more chances you have to realize that maybe you are being unreasonable; you'll also realize how unimportant the things you're angry about really are. There are two cautions in using humor. First, don't try to just "laugh off" your problems; rather, use humor to help yourself face them more constructively. Second, don't give in to harsh, sarcastic humor; that's just another form of unhealthy anger expression.

What these techniques have in common is a refusal to take yourself too seriously. Anger is a serious emotion, but it's often accompanied by ideas that, if examined, can make you laugh.

The first visualization strategy does not sing to me. The second section, speaking about cranky people feeling that things should go their way and not necessarily being able to handle it well when things don't is more relevant. But, again, the strategy to deal with it does not resonate well with me. I'm not that great at visualizing.

The last paragraph, though, is dead on. Anger is caused, quite often, by taking yourself too seriously, giving yourself more importance than the object of your anger. Humor, by definition, requires that you not take things too seriously, but instead see their aburdity, their silliness, their ... humor.

When I am not too absorbed in my crankiness, but have a part of my mind standing a bit apart and observing what I'm doing, I can often see that my crankiness is caused by taking myself too seriously. That's when I have a chance to ask myself why I think this issue is such a big deal. Whether I use humor to skewer my self-importance and expose the absurdity of my reaction or some other tool, this self-awareness is a key way for me to slow down cranky reactions.

In-House Elevator

The rental house we stayed in had a small elevator built in. It was just large enough for Skip in her wheelchair and one other person.

It worked by opening the exterior door in the manner you'd open any regular door to a room (ironically, you can see it is opened with a knob rather than a handle). Then, the gate slides to the right, though it required a fair amount of oomph to push it. Once inside, the exterior door and gate must be closed before the elevator will move.

As you might imagine, it wasn't possible for Skip to operate this on her own. Even if the doorknob weren't an impediment, she'd have to back on in order to close the door and gate. The strength required for the gate manipulation would have been more than she could manage. But, with all that said, the elevator was a great boon. The house was set up so that the bedrooms and kitchen/dining/living room were all on the top floor (some of our friends theorized this was to take advantage of the superior view on the second floor). Clearly, none of this would have been accessible without this elevator.

Our dogs, Ruby and Sally, were a bit freaked out when they rode the elevator the first few times (they don't know how to climb more than a few steps at a time). Within a day, they were well acclimated, as were the 2 pugs that were with us. The labs took the stairs.

Vacation Wrap-Up, Part 2

Some other bits and pieces from vacation ....

My Birthday
I turned 53 on our last full day in Maine. Earlier in the week, some friends had discovered a lovely restaurant in a nearby town that was on the water. They'd enjoyed a great lunch sitting outside by the water and thought it would be a great spot for my birthday dinner. Unfortunately, the elements didn't cooperate for dinner. It was a bit rainy, very muggy and buggy. Fortunately, the food was good and the company better.

The Dock
The rental house had a floating dock that was accessible by wheelchair. We spent 3 or 4 afternoons relaxing there. It was set up with a round table and umbrella, which was important to keep Skip out of the sun. I'm not sure what causes it, perhaps one of the many pills she takes, but even very little sun can cause her skin to burn and blister, so we needed to take extra precautions for her.

The water was swimmable for those who could get down the ladder into the water (this was not the kind of ladder one finds in a swimming pool; it was a regular wooden ladder with most of the supporting half cut off and screwed into the dock. It was an odd setup but the wide steps and angle of the ladder made it easier for us middle-aged, and in some cases, full-figured, gals to get in and out of the water.). At the dock, the water was a bit over 5' deep, so easy for me to stand in (I'm almost 5' 11").

Sometimes, we'd be joined at the dock by the 4 labrador retrievers in our party. They were rambunctious and joyous, delighted at having the chance to swim. Occasionally, two of them would run off for a bit, but they always came back, seemingly none the worse for wear. Our two pups, Ruby and Sally were always at the dock with us.

Skip hoped the dogs would enjoy swimming. Our previous dachshund, Sadie, needed no invitation to swim. If Skip was in the water, she would jump in and swim to her side. When I went into the water in Maine, though, neither dog showed any desire to swim to me. I briefly gave Sally the chance to swim on my first foray into the water and she clearly indicated it wasn't to her liking. Our last day on the dock, I had Ruby and Sally with me on a float, while I waded near the dock. Ruby was her usual placid self. She sat/reclined on the float in exactly the spot I'd placed her. Sally wandered around on the float, going to the edge in various spots, leaning over to examine the water, taking an occasional drink. She got too close to the edge at one point and slipped right in. I saw her sink through the dark pond water and had a brief millisecond of panic. Panic ended when she broke through the water's surface and grabbed for me, trying to climb up my body so she could get completely out of the water. With that, I put both dogs on the dock and didn't put them on a float again.

Before we got to the rental and saw the actual layout at the water, Skip had planned to swim. She bought a mask and snorkel for peering into the water, swimming attire, and had great hopes that the dogs would swim in after her, just like Sadie. Reality, unfortunately, couldn't support her hopes. The banks of the lake were deep and covered with brush, and the lake's bottom was quite mucky near the edge. The labs were able to navigate the banks, but it wouldn't work for Skip. We had hoped to take advantage of the boat landing just a few hundred yards away, but no swimming was allowed there. It was very disappointing for Skip that she couldn't swim.

Living With Able-Bodied People
I posted a bit about this during our vacation. Skip and I live with just each other and our two dogs. I work from home. The only in-person contacts we have with others during the week, in general, are either MW, Skip's aide, who typically works 2-3 half days/week and medical providers, such as the nurse who comes to check Skip's ankle. Our weekday routines revolve around Skip's care and my work schedule. For our two weeks in Maine, we were with 4 able-bodied friends who were each independent and had no caregiving responsibilities.

At home, I think our routines are productive and work well for us. Our lives are challenging but manageable. In Maine, our friends modeled what life can be like for those who don't have Skip's health problems to deal with day to day. I had a strong mix of reactions. I was saddened, thinking of all that Skip was missing in the mornings with our friends because her morning routines for cleaning/toileting/dressing took so damn long. She was never able to experience the casual chatting and coffee out on the deck in the mornings. I was often grumpy about helping her, in part because it was more challenging in the rental house, but even more because I wanted to be out on the deck drinking coffee too. I had some unproductive feelings of jealousy and self-pity but managed to get past that fairly early in the vacation.

I think the bottom line for me was this: time spent in the house with able-bodied people made me feel more strongly the price we pay for Skip's disability and how deeply it permeates everything in our lives. I was surprised about this effect; it had never occurred to me that I'd feel this during our vacation.

Our friends were great during the vacation. The able-bodied among us all had to do a bit more because Skip couldn't help with meals/dishes or schlepp stuff down to the dock and so forth. Everyone pitched in. And, they were all happy to help Skip when she needed something.

* * * * * * * * * * * * * * *

Skip was very sad to bid the water goodbye. She loves being by the water and hopes we can someday live beside a lake. I'd love that for someday, too.

Vacation Wrap-Up, Part 1

We got back from our Maine vacation yesterday evening. Although our rental lasted through today (Saturday), we would have had to leave by noon and I knew getting Skip and me ready, stuff packed up and car packed would require more time than just the morning (unless we wanted to get up at about 4am). Also, returning home Friday would give me 2 days to unpack, get into the swing at home and be ready for work on Monday morning.

As it happens, events conspired that the entire group had good reasons for leaving on Friday, so we all packed up in concert, making the cleanout of the kitchen and the general housekeeping before departure a good collaboration.

All in all, it was an excellent vacation. Lovely location, mediocre weather, great friends, good food, relaxing time. I'm pretty set in my ways, so it took some time adjusting to a houseful of people, but it was definitely worth the adjustment.

Thought I'd post a bit about some of our vacation ....

Caregiving
Because we didn't have all the advantages of home for Skip's care, her day-to-day maintenance was harder, but not insurmountably difficult. And, it was definitely worth it so that we could be there in that location and with our friends. Every day, I found small ways to improve the process. By the time we were ready to leave, we'd developed a good routine that was harder than at home, but workable.

Unfortunately, the overly high bed proved to be our biggest issue for two reasons. First, our patient lifter with Surehands body support attached could not get Skip high enough for me to transfer her onto the bed alone. As a result, we had to draft our friends to get her up onto the bed each night. Our friends were always very willing to help and did a great job. We worked well together to find better ways to work it when some of the transfers, especially the early ones, had somewhat awkward results. Unfortunately, on our second to last night, I allowed the patient lifter to become unbalanced while moving Skip to the bed and she fell to the floor, hitting her head on the bedstead on the way down. (I did not have the base of the lifter opened wide for maximum stability, so this was totally my fault.) After making sure Skip wasn't too badly hurt, the group banded together quickly to figure out how to get her off the floor and onto the bed by using a sheet to lift her. (Skip did get a good-sized egg on the back of head, but the skin wasn't broken. Fortunately, one of the friends with us is a doctor and she was able to give Skip reassurance that her injury was relatively minor.)

The second problem with the bed height concerned hygiene. Without getting into too many details, suffice it to say some of our daily hygiene routines are conducted with Skip on the bed before she gets dressed. Without being able to get on the bed during the day for this routine, cleaning was much more difficult.

The patient lifter wasn't quite high enough for a clean transfer onto Skip's power chair. However, with the lifter I could get her positioned at the edge of the seat and then use the waistband of her pants to pull her onto the cushion. It usually required a pull, drop lifter arm a bit, pull again to pull her completely on. This resulted in some major wedgies early on, but I eventually got the hang of it and wedgies were kept to a minimum.

Shopping
About 30 minutes from our rental was the town of Rockland, on the Maine coast. We made a couple of trips there for some shopping, both of which were pretty frustrating. Rockland has a lovely main shopping strip, filled with a variety of galleries, eateries and speciality shops to appeal to tourists such as ourselves. All the stores were on street level, but most were inaccessible because they had one step up to get in. How hard would it have been for all these stores to have slight inclines from sidewalk level to entry? The best shopping for Skip was the store connected to a small art museum, where she bought some Maine books. When only about a third of the shops had ramps in versus a step up, my whole attitude about the area was impacted. I certainly did not want to give any business to the folks who couldn't bother to make their shops accessible to Skip or other wheelchair users.

The next day, we went back to Rockland to visit a large antique store we hadn't gotten to the day before. Skip loves antiquing. We've found that small antique shops are usually cluttered and all but impassable for wheelchairs, so try to find large shops with lots of dealers. This gives variety and, usually, better accessibility within the shop. Even with our GPS, it took a bit to find this out of the way shop. When we got there, we found it was indeed a large, group shop. Unfortunately, the accessibility was spotty, with lots of level changes from room to room within the barn building that housed it and, more importantly, it was very cluttered. Admittedly, Skip is quite a good navigator in her chair, but I spent most of the time gritting my teeth, worried that she'd have a run-in with some display or another. About 10 minutes in, while rounding a corner, her left pedal caught a small bookshelf loaded with glass and china, knocking a framed picture on one level over onto china cups and saucers. Arrghh! Miraculously, nothing broke, but my patience was pretty frayed and I hovered like a nervous mother hen until Skip finally gave up and we left. I feel badly for her in these situations. She can't get there without me taking her, but I'm pretty cranky while she's there so it can't be much fun for her.

Weather
While buying the Maine books at the museum shop, I chatted with the cashiers about the weather. Two facts they related that pretty much crystallize the weather on this vacation: this was the latest point in the year that an 80 degree F temp had not been hit there in over 150 years and, regardless of the August rainfall, this was already the wettest summer in history for that area. We had only a few days of the 13 we were there that were beautiful end to end. But, we also only had a couple dreadful ones. Most were cool, cloudy and muggy. While nicer weather is always better than clouds and rain, our vacation didn't hinge upon it, so we were lucky in that regard. We did take full advantage of the lovely days, hanging out on the dock.

Well, this post has gotten quite long, so I'll wrap up the remainder in a second post tomorrow.

The Pups Go Adventuring and Plans for Today

Our rental here in Maine is located at the end of a dirt road that's perhaps a mile long. This gives the dogs the chance to wander around outside with no fear of cars. When it isn't raining, it's been great to wander out with them between house and water, to give them time to root around. Being small, a little space goes a long way for them.

We're supposed to have a short, light rain in the late morning followed by clearing and partly sunny for the afternoon. We're all looking forward to a chance to get out and relax on the dock and get in a bit of a swim. (Well, Skip won't be swimming today; since it's a weekend, the public landing will be too busy.)

One of our friends is preparing a fresh guacamole now, for a taco dinner this evening. It has filled the main living area with the most wonderful smell of fresh onions, garlic and the like. Yum!