Tuesday, June 30, 2009
I got up around 5:40, before the alarm went off. Took the pups out. Gave them their morning treats. Made coffee.
It's a nice morning outside, a bit cool and not humid, so I opened a few doors to let in some fresh air.
Now, I'm sitting on the couch. Just finished my first cup of coffee. Ruby has come up and joined me here, as she does every morning.
Soon, the day will start in earnest. It's Tuesday, and just like every Tuesday, I have an 8am conference call. And, the trash gets picked up at 10, so I have to get that taken care of before then. Skip will want pills soon, and so I'll have to get those all set up. The work demands, the home demands, they'll begin shortly.
But right now. Sitting here in the early morning light, Ruby quietly snoring beside me, I have a bit of time just for me. How great is that?
Sunday, June 28, 2009
I looked online, primarily at Spinlife.com, to see what portable lifts are available. Then, I checked them out on eBay. Was the sole bidder on an almost new lift that sells on SpinLife for more than $500, got it for less than $100 including shipping. It came in a lot of pieces, shown on the living room floor in the first photo. Managed to get it put together in less than an hour. Attached a SureHands body support to see how that would work. Looks like we'll probably need to get a sling for most of the transfers, as the body support is so long it's hard to get Skip elevated high enough to transfer on/off her power and manual wheelchairs (based on our test this afternoon).
Will scour eBay for slings this evening!
Once we get a sling and some experience with it for transferring, I think this will prove a great device when we're traveling. Since we plan to to do all our traveling via car going forward, we'll be able to bring this with us in the Toaster (aka Honda Element).
Note: If you have familiarity with slings for transfers, can you share your experience? There are lots of sling styles available and am not sure which to pick.
Feeling like the demands are a bit too much for me puts me on the edge of cranky. It's so easy to topple over that edge with a crabby reaction at the slightest provocation. And, that's exactly what I did for a day or so.
Yesterday, I drove the two hours each way to visit with my parents. Nice to get some alone time in the car. Good to visit and feel that I help them out. Good knowing that MW has all in order for Skip back home.
This morning, I did a bit of organizing. Unpacked and put away medical supplies and some pills that came for Skip through mail-order. Went through mail and paid some bills. Washing machine is running a load of wash. Will have some time today for a few honey-do list items to feel even more organized. I love Sundays! Who can feel overwhelmed with so much time to get your own little piece of the world in order?
Friday, June 26, 2009
My trip was successful, the meetings went very well, looks like we'll be getting lots more work as a result of them. It was great to see some of my day-to-day contacts at my client face-to-face. Had a good time with my work colleagues. And, Charlotte's weather was absolutely gorgeous. Sunny, hot, but not too hot, and not very muggy. On Wednesday afternoon, we walked the 10 blocks from our meeting to the hotel and it was great to be outside.
Skip was back home in a pretty nervous state for much of the time. But, no mishaps. MW took very good care of her, as always. The agency aides got her all dressed and set up in the mornings.
One odd thing happened. I had crashed in my hotel room at about 9:15 Wednesday night. My cell phone rang around 10:45, waking me out of a dead sleep. It was MW. The SureHands Lift in the bedroom wasn't working. We covered some of the obvious things, such as how to charge the battery, in case that was the problem, how to tell if the remote was working and such. Was starting to get very concerned, imagining the difficulties they'd all have without the lift. Just before the call ended, MW asked me what the white switch was on the outside of the lift motor. I explained that was the on/off switch and shouldn't be an issue, we never turned it off. As we ended the call, MW said she'd call back in 20 if the issue persisted, otherwise they wouldn't call if she figured out the problem.
When I laid back down in bed, my heart was pounding and I was fit to be tied, worrying about how they'd get by if the lift didn't work. I laid there for about 10 or 15 minutes thinking through their not-so-great options and decided to call back to find out how it was going. No way I could just assume after 20 all was well. MW had figured it out! Turned out that the aide in the morning had turned the motor off! That's what I used to do, to save battery life, in the early days of having the SureHands, and she must have remembered that from when I trained her back then. By the time I called, Skip was already in bed and things were getting back to normal. Yay for MW!
Fortunately, that was the only real problem for Skip and company during the trip. She was well taken care of in my absence, but I know she's glad I'm home. And, I'm glad to be home, too.
Tuesday, June 23, 2009
It will be odd for me to be traveling on business. Where I used to be on the road every other week for months at a time, I haven't traveled for work since August 2008. Over 10 months. I'm sure the long gap since the last trip is contributing to Skip's nervousness. She's just plain out of practice handling my being away.
I am hoping the trip plays out the same way most business trips have in the past:
- Skip finds out she's capable of doing more than she gives herself credit for. It makes her feel better about herself.
- She also has reinforced for her how much I actually do day in and day out, and it renews her appreciation for me.
- Skip really enjoys MW's company and they'll have a great time together.
- I know Skip is in good hands and will have minimal worries about her while I'm away.
- I will get a short break from caregiving activities, which is always a pleasant respite.
I think the progression of Skip's MS will make the appreciation of her own capabilities a bit less rewarding this trip than in the past. But, as I write this, I realize that "capabilities" aren't always about physical abilities. She has a very organized approach for the mornings, to ensure all is in order before the agency aide arrives and everything goes off without a hitch when the aide is here. She'll be managing all that for the next few days.At least I'll be leaving the gloomy, cold weather here and heading to Charlotte, North Carolina, where it's been beastly hot. I'm tired of chamois shirts and always feeling a bit chilly.
Sunday, June 21, 2009
In August 1981, I was 25, employed as a secretary, working at Harvard Business School, and living in Medford, Massachusetts, in the top-floor apartment of a triple-decker. In the smaller cities that surround Boston, such as Cambridge, Somerville and Medford, the housing stock is largely made up of triple-deckers, which are freestanding houses with one apartment on each of its three floors. I had been living there for a few years, originally with my last girlfriend. She and I had broken up 8 months prior and she'd moved out about 3 or 4 months ago. I was going to move in two weeks myself. Moving into a section of Boston called the Back Bay, into a small apartment with a gay male friend on September 1st. I had known him for about half my life and we even dated briefly during our younger, straight days.
I went that evening in August to a gay bar in a suburb south of Boston called Randolph. I was meeting a couple of friends there who had just started going out together (I had introduced them). The bar was a homey sort of place with lots of different rooms frequented by both men and women. I spent a bit of time with my friends then went over to check out the pool table and video games. I loved pool, though wasn't very good at it, and was addicted to video games. While I was playing a video game, I noticed out of the corner of my eye that there was a woman hovering nearby. I was curious what was on her mind, so didn't put in another quarter when I lost the game.
I stopped playing, and Skip came over. "Hi, my name's Skip. Can I buy you a drink?" I agreed, we sat down for the drink and began to chat. We spent the rest of the evening together, feeling an immediate connection. I liked her right away, thought she was interesting and funny. She has the most amazing sense of humor with a great, dry wit. She was cute, intelligent, interested in me. A great combo!
When I first laid eyes on Skip, she was quite feminine in appearance. She was dressed more for an evening out in a straight bar. Dressy pants and blouse, with high-heeled sandals. The topper was ... she was carrying a purse! I found out later she had been planning on going out to a straight bar but instead found her way to a gay one instead. She was still at that point in her life where she knew she was attracted to women, had been in relationships with a few, but was still trying to fit in to the straight world.
I had been out as a lesbian since I was 20 and had not fought the decision at all. When I fell for my best friend in college, it suddenly put all the pieces into place for me and I never looked back. I realized my years of attempting to be straight were the result of all the societal conditioning we're bombarded with. For Skip, it was not so easy. Although she had had relationships with two other women (one for about five years), she had not accepted herself as a lesbian and was still dating men.
I think it was good for Skip to meet up with me. I knew what I was and was looking for someone just like her. No questioning the object of my affection, nor expecting her to do the same. Our relationship went from 0 to 60 in about 1.2 seconds. There's a joke that goes something like this, "What does a lesbian bring to her second date? Answer: A U-Haul." Our situation wasn't much different. I moved in to my new apartment on September 1st and Skip was a full-time member of the household within a few weeks' time.
Fortunately, my roommate was accepting of the situation, probably because his boyfriend was with us quite a lot as well. We worked out pretty well as roommates, as he lived with us in three different apartments during the first 8 years Skip and I were together.
When I think back to Skip in those days, one of my strongest impressions is of her face, laughing. Big smile, bright eyes, lovely eyelashes, fair Irish skin aglow, short light-brown hair. She took such delight in life. She still has a great sense of humor, but it isn't too often nowadays that we see the laughing with abandonment and happiness once in such great abundance.
Thursday, June 18, 2009
Historically, I'd prided myself on my ability to deal with issues in all parts of my life and find creative solutions to those problems. I tended to have a positive outlook on life, expecting good things to happen to Skip and me. I expected I'd be able to keep on dealing and moving forward with my life.
Something happened. Did I get worn down by the demands of life? Draw on the reserves a bit too much so there wasn't more to give? Did my need to be the one who could handle it all keep me from facing my fears and feelings? Yes, yes and yes.
I became brittle. I couldn't deal. I got cranky. I saw little purpose to my life. 2008 was, without a doubt, the worst year of my life.
So, how am I feeling today? I feel optimistic about the future again. Of course it will have challenges, but I know we'll face them and figure out how to deal with them. We'll even plan ahead for some eventualities so we're able to handle them most effectively if they come to pass. I don't feel a big empty hole in the middle of my life anymore. That hole was the lack of purpose and meaning. I feel confident again that the giving and receiving of love is what life is all about and caring for Skip gives my life purpose.
Is the major attitude adjustment a result of blogging? Well, yes. At least in part.
I've mentioned before that I'm not particularly introspective and need to think "out loud" to really understand what I'm thinking and work through issues. By writing posts about why I get cranky, how to counteract my crankiness, and how I feel, I've gained some insights into my motivations and feelings. This blog has been a great tool to open up pathways into the murk that lies below the surface in my brain.
Gaining these insights has prompted some behavior changes in me. Even more importantly, though, they've allowed me to react in ways other than with crankiness as I honestly understand my feelings and motivations better.
These outcomes were what I'd hoped for when I started blogging. They could have occurred if I'd written these posts in a journal that never saw the light of day.
There was something I didn't realize I was missing before: the blogging community. I've barely put my toe out into the blogging world and already I can feel the positive effects of the community. I've "met" some great folks as a result of blogging. And, many of them are struggling with the same stuff as Skip and me. It's great to write a post and then see comments come in that give support, put a new slant on the post's content or just say "hi." Similarly, I've begun reading lots of others' blogs that I've found since I began this one. I am constantly impressed by what others write, both in content and quality of writing, and often find it quite moving. I look forward to reading from my blogroll every day.
I know my attitude will swing into the dark side in the future. I see blogging -- both the process of posting and interactions with other bloggers -- as a great way to climb back out of future funks.
Tuesday, June 16, 2009
Skip's congested, pretty noisy when she's sleeping, feels more under the weather than usual. She's been feeling very weak as well, with her hands less effective than normal. She's been a bit sleepy and a bit out of it, which I'm chalking up to her cold medicine (it's something new we hadn't tried before because the local drug store doesn't have much in the way of cold meds this time of year ... mostly sinus/allergy drugs). I walked into the living room after wrapping up work for the day and she was asleep in her wheelchair. It took quite a bit to rouse her (she's a fairly light sleeper, so typically a normal-voiced "Skip" would have awoken her). After calling out to her a number of times didn't work, I went over and touched her hands, that didn't work. Then, touching her face got her attention. When she did wake up, she was a bit fuzzy for a little bit. Fortunately, she returned to her normal, sparky self by dinner time.
I worry a bit at times like this. You tell yourself it's the cold medicine that's having this effect, which is logical. But, with all the horrible things that MS does to a person, what if some of what's happening is MS-related?
I look forward to discontinuing the cold pills as soon as she starts to feel on the mend.
Friday, June 12, 2009
Tuesday, June 9, 2009
The first strategy, relaxation, has worked pretty well. My crankiness seems more short-lived lately, because it's hard to get too crabby when you're hearing Conan O'Brien say "be cool, my babies!" in your head. And my mood has improved by trying out the Wii Fit and starting to get a little exercise.
So, onto cognitive restructuring:
Simply put, this means changing the way you think. Angry people tend to curse, swear, or speak in highly colorful terms that reflect their inner thoughts. When you're angry, your thinking can get very exaggerated and overly dramatic. Try replacing these thoughts with more rational ones. For instance, instead of telling yourself, "oh, it's awful, it's terrible, everything's ruined," tell yourself, "it's frustrating, and it's understandable that I'm upset about it, but it's not the end of the world and getting angry is not going to fix it anyhow."
Be careful of words like "never" or "always" when talking about yourself or someone else. "This !&*%@ machine never works," or "you're always forgetting things" are not just inaccurate, they also serve to make you feel that your anger is justified and that there's no way to solve the problem. They also alienate and humiliate people who might otherwise be willing to work with you on a solution.
Remind yourself that getting angry is not going to fix anything, that it won't make you feel better (and may actually make you feel worse).
Logic defeats anger, because anger, even when it's justified, can quickly become irrational. So use cold hard logic on yourself. Remind yourself that the world is "not out to get you," you're just experiencing some of the rough spots of daily life. Do this each time you feel anger getting the best of you, and it'll help you get a more balanced perspective. Angry people tend to demand things: fairness, appreciation, agreement, willingness to do things their way. Everyone wants these things, and we are all hurt and disappointed when we don't get them, but angry people demand them, and when their demands aren't met, their disappointment becomes anger. As part of their cognitive restructuring, angry people need to become aware of their demanding nature and translate their expectations into desires. In other words, saying, "I would like" something is healthier than saying, "I demand" or "I must have" something. When you're unable to get what you want, you will experience the normal reactions—frustration, disappointment, hurt—but not anger. Some angry people use this anger as a way to avoid feeling hurt, but that doesn't mean the hurt goes away.
The first time I read this article, this notion of "changing the way you think" really resonated with me. In particular, the jump from reasonable to extreme and illogical when you get angry was a hallmark of my crankiness. In recent times, I have found this is typical of me when I get cranky -- I jump to an extreme reaction pretty quickly. I think it's a bad habit I've really burned-in to my neural pathways. This section of the article is now in the back of my mind when I do start using exaggerated language. It helps me recognize what I'm doing and pull back from the cranky state more quickly.
On my re-reading of this section now, I see the last paragraph contains a lot of meat for me to chew on as well. It's true for me that the reaction I choose to disappointment or lack of agreement is often crankiness. There's a very good point here -- yes, disappointments and disagreements will occur, but the key is how you choose to react to them. I "would like" to see myself reacting in this more tempered way.
The last sentence in the section is the most thought-provoking of all -- expressing the notion that some people use anger as a way to not deal with their feelings. I recognize now that I do that, as noted in Cranky Reason #5: I Get Scared. At the time I wrote it, though, I didn't look at the crankiness as a way to avoid looking at the scariness of the situation. This one sentence has led me down a path of thought so I can clearly see that. I wonder if that's one of the reasons why I've become increasingly cranky over the last few years -- just trying to keep those scary feelings at bay.
Okay, another "aha" moment for me .... just admit it, Cranky, this situation sometimes scares the bejesus out of you. If I acknowledge this, I don't have to get cranky to fend off the scariness. What a concept!
Sunday, June 7, 2009
I see now I believed the same future was in store for me. I have a good job, I'm good at it, but not excited about it. I feel reasonably rewarded by it, both financially and mentally. I also know I could do it better, but that would require a level of effort and engagement that I can't give without some costly tradeoffs elsewhere in my life. Bottom line: I don't work at something I'm passionate about. I figured I'd accumulate resources to finance retirement as early in life as possible and have more time to follow my passions at that point in my life. A la my father.
On the way to following in my dad's footsteps, reality happened.
- Reality number 1: Skip has MS. Who knows what we'll have to deal with in the coming years. Would we better off if I worked as long as possible so we could afford aides? How long can I be the caregiver, as I age and the possibility of further progression exists for Skip? Will we need to live in an assisted living setting rather than our home of 20 years? If so, when?
- Reality number 2: The market melted down. With my 401k taking a body blow, the ability to support us in retirement is now postponed for years.
- Reality number 3: I honestly don't know what I'd do with myself in retirement. The only thing I can come up to keep me from being a couch potato is a part-time job. Is that retirement? I still have work to do to find my post-employment "passion," the thing or things that engage me enough to pull me out into the greater world.
Post-script: this post is a good example of why blogging is such a useful process for me, personally. The content came out much differently that my prep notes had planned out (yes, I sometimes make notes before writing a post). The exercise of writing this out in logical fashion helped me finally put all the thoughts/clues together and realize, "Aha, that version of retirement I've been carrying around in my head just doesn't make sense for my reality!"
Friday, June 5, 2009
I haven't traveled on business since August 2008. When I first started my professional career, I thought business travel was cool and welcomed every opportunity to get out on the road. It kept being cool for a long, long time. I loved getting out to meet with clients in person. I loved the frequent flyer miles that gave Skip and me free flights for our vacation trips. I loved getting out of the office. I loved seeing other parts of the country without having to shell out for a vacation trip to get there.
In 2001 and 2002, I worked for a startup where I finally started to burn out on travel. I had 14 clients from Ohio to California, and was on the road a lot. On September 11th, our friends and lots of Skip's family called her to find out if I was on the road and to make sure everything was okay with her. That's because they all knew I traveled so often. Fortunately, I was supposed to travel to Dallas on September 11th, not a day earlier, so I didn't get caught halfway across the country with no way to get home for days on end.
I started at another firm in early 2003. Traveled only occasionally until 2005, when I began managing a year long project for a client in Texas. Traveled to San Antonio twice a month for over a year. You know you've been traveling too much when you don't have to order breakfast in your hotel ... the waiter knows your exact order and has you taken care of without the need to say a word other than "Good morning."
Skip never liked my traveling, even when she was fully able-bodied. She particularly disliked my being in a different time zone. I think she feels safer when I'm around and alway has.
As time passed and her MS progressed, the supports when I was out of town needed to increase. First, meal prep was too much for her, so I started leaving prepared meals she could heat up in the microwave. Then, we had to start having someone come in in the mornings for a few hours and at bedtime for a few hours. Now, care is pretty much full time. Whenever I've traveled over the last few years, Skip's aide, MW, has been here almost around the clock along with an aide from an agency to help with the morning routine.
Even with all this help, though, Skip still gets nervous when I'm away from home. She knows if something bad happens and I'm home, I'll be able to take care of it. I might get cranky when the bad thing happens, but I've always been able to fix the problem. And, she's very private and doesn't want other people besides me to help with personal care.
I understand these feelings. I think having someone around Skip can count on no matter what comes makes the horrible-ness of MS more bearable. If I'm not here, the safety net is temporarily missing.
So, I know Skip will be nervous for the next 3 weeks, until I go for my brief overnight June 24-25. Until I actually pull back into the garage upon my return home, she'll be nervous. My challenge will be to keep from getting cranky while she's in her nervous state. I've offered a trip to Home Depot (a place I hate and she loves) this weekend to keep her spirits up.
Tuesday, June 2, 2009
"Really?," she said, her questioning reaction clearly showing on her expressive face.
"Yep, Saturday, Sunday, Monday and today. I've been feeling good."
"Yeah, I guess you're right," she agreed, following a bit more thought.
Well, perhaps Skip isn't 100% sold on my good mood over the last few days, but since my post about using relaxation as an anti-crank technique, I have been feeling good.
- I determined my calming phrase will be "be cool, my babies!," a quote we stole from Conan O'Brien, oft repeated here at home. Curiously, I've used this on Skip to calm her as well as using it on myself.
- When I got cranky during the bedtime routine last night, I felt myself beginning to have an extreme reaction and was able to reel myself back in before going into a full-bore crank out. I reminded myself that the language I was using in my head just exaggerated the cranky reaction, helping me to "dial it down."
- I tried Wii Fit yoga. Turns out the yoga moves won't work for me because they aggravate my already painful shoulders, but I did find some balance games that were fun, such as ski slalom. I sucked at it, but I found it fun enough that I'd enjoy playing it and getting better.
- I've avoided crankiness in some situations tailor-made for it. Often times when Skip feels stressed, I get cranky. She was feeling stressed in advance of our trip to Cape Cod on Saturday. I'd anticipated this and was prepped with "be cool, my babies!" to help take the edge off. I was able to be the calming force instead of amplifying the stress and never did fall out of my good mood.
Yep, feeling pretty good.
Monday, June 1, 2009
As Skip's mobility capabilities decreased, she became unable to make the transfer between wheelchair and shower seat. The distance was too far to make via transfer board. So I became the means to transfer for a time. This transfer was quite awkward and sometimes resulted in a fall for Skip. Clearly, not a good solution for Skip (or me).
We started to look around for other options. We were hampered by the dimensions of the shower stall door opening. The ideal would be to find a wheelchair that could be used in the shower and would fit through the stall opening and over the low lip. All the different sites that specialized in wheelchairs we looked at did not have a chair that met these criteria.
Knowing we'd need a different shower chair eventually, even if it wouldn't fit the current shower, I purchased the chair shown in the last photo from SpinLife.com. Its measurements looked like it would be a bit too wide to get through the shower door. But, it was less than $200 with free shipping, so I figured it was a low risk purchase. The feature I liked best about it was the arms lowered so we could have Skip transfer into it with a board from the bed. I could then wheel her into the bedroom and get her over a lower lip into the shower stall. Unfortunately, as I suspected, it didn't fit width-wise through the stall door. For me, this sealed the deal that we'd need to look at reconfiguring the shower as there seemed to be no remaining options available.
We had the interior of the shower expanded, the front lip lowered to just a few inches and the door removed entirely. Now we had plenty of room to get Skip's shower chair in. The lip proved to be a bit of a strain for me to pull Skip and shower chair over, so we bought an inexpensive ramp made of airplane aluminum on eBay. I believe this kind of ramp is called a threshold ramp, since it's designed to get a wheelchair over a one-step threshold. Worked perfectly in this situation. We don't use either the commode bucket or the front pedals on the chair, as shown in the photo, both of which were easily removed.
Since the shower was redone about five years ago, we've been using the shower chair from SpinLife. Before purchasing the Sure Hands lift, I'd "pick and plop" Skip from the bed to the shower chair. (My hope of using the transfer didn't really pan out, as the seat of the shower chair is fairly slippery.) Once in place on the chair, I'd wheel her into the bathroom. Then, pulled the chair up the threshold ramp and into the shower. The wheels lock to ensure stability. Now, with the lift, we place the shower chair in the shower, then transfer her from wheelchair to shower chair.
Even as Skip's trunk muscles have weakened over the last few years, the shower chair has proven a safe tool for showering. Though it's the cheapest wheeled shower chair we found (some cost thousands), it has met our needs for Skip's current disability level. For someone with MS who can no longer walk but can sit upright without slumping over too often and can hold his/her head upright, I'd recommend taking a look at this option.