At the Pahk

Gary and Josie

G&J with the lovely Skip during the 10 minutes she wore this hoodie. Then she got too hot.



We went off to Fenway Park on Sunday to meet up with my brother, Josie and Gary to take in a Red Sox game. Some impressions from the day:

• We got up nice and early (can you say 6am?) as we had to be out of the house by noon.
• The weather turned out to be nicer than I'd expected. Neither Josie nor I ended up using the throws I brought.
• Skip got quite a sunburn on her face, arms, neck and upper chest. I got a minor one on the right side of my face only. Stylish!
• The tables at the right field roof box (under the Budweiser sign for those familiar with the Pahk) are great for visiting with friends but not so great for watching the game. That was okay with me, as my intentions were 75% socializing and 25% game watching.
• The Red Sox suck! Clay Bucholz gave up a home run in the first and we knew the game was over. Spotting the Orioles a 5-1 lead, the Sox did score a grand slam in the 4th (I think) to tie things up. We finally left at the start of the 13th inning and watched the Sox lose in the 17th when both teams had position players pitching since they'd used up all the pitchers.
• This was a chance to get to know Gary and Josie better and I enjoyed myself with them immensely. My brother and Gary spent time talking about tracking the game (Gary had a pad for scoring) ... adventures in geekland! Skip is shy meeting new folks but enjoyed herself as well.
• It was great having some time out with Skip. She doesn't get out much, mostly just for quick shopping trips and the like. We had time outside, time with new friends, a no-stress outing.

One last thought ... the Red Sox organization has been claiming a sold out streak of many years duration. Unless "sold out" means 90% of the seats in the park are sold, I think their claim is bunk. We saw whole rows in the upper bleachers completely vacant. Seemed to be more open in general than I recall from years past. I noticed the handicapped accessible seats down by the ball boy on the first base line that cost $250 each in 2004 were all vacant. I wonder when they finally admit the park isn't sold out?

All Work and No Play Makes Cranky Even Crankier

Caregiving is hard work, let me tell you. It's not continuous effort, but you're always on call to help. There's a strong but invisible tether that keeps you close by so you can lend a hand when needed. Being on call 24/7 is wearing.

So, yesterday I cut the cord for a bit and went to Foxwoods. Skip's aide/friend, the intrepid MW, was staying with her until I got home, so I knew she was in good hands.

I haven't been to a casino since early 2007 when we last went to Las Vegas. And, I stopped playing poker online over a year ago, before the federal government shut down the 2 biggest online poker sites for US players in April 2011.

First, I stopped off in central Mass to drop things off at the two spots where I have stuff for sale. One is associated with a flea market, so the stuff I put there is generally household items and low-end items. I dropped off about 50-75 baseball caps that I'd purchased for Skip over the years. She had me get them wherever I traveled to during my many years of heavy business travel. Then, I went further west to the antiques/collectibles shop where I just set up a small space last week. I brought all the items from our Kennedy memorabilia collection there last week, among other things. It was fun to see that some of the stuff had already sold. Yesterday, I dropped off a bunch of fruit crate labels Skip collected many years ago. I found them shoved away in a closet I cleaned out at home last week. They'd been there for 20 years.

So, following those errands, I headed off to Foxwoods. I realized just how long it was since I'd been there when it came into sight. There was a huge new hotel, the MGM Grand, that wasn't there when last I was. And, all new roadways had been added to make traffic flow around the casinos much better. I swooped right into valet parking and headed into the complex.

The first thing I noticed was the smell of stale smoke. I forgot how casinos are just about the last indoor places that people can smoke. Fortunately, the poker room is completely non-smoking. I wasn't sure whether I'd play poker or craps first, but as I ventured inside, almost the first thing I saw was the poker room entrance, so that was my first stop.

I really prefer pot-limit omaha over all other poker games, but I've never played PLO in a live casino, only online. Online, it's much easier to keep track of the pot size, which is a very important consideration in the betting rounds. Most of the Omaha spread at Foxwoods is limit and is also the high-low variety, neither of which I like anywhere near as much as PLO. So, I wasn't sure if I would play Omaha or just stick with no-limit holdem.

When I got into the poker room, it was huge huge huge. I found the desk for signing up. It being a Saturday of a holiday weekend, there was a dizzying array of games offered. I hate to admit it, but I found the environment a bit intimidating. I signed up for 1/2 PLO, 5-10 Omaha hi-lo limit and 1/2 no-limit holdem. But really, I figured I'd play holdem as that's the simplest game of the 3 and good to start with for my first visit in millions of years.

In about 5 minutes, I got called for the NLHE and went off to a table where I was fortunately seated in the center, across from the dealer, which made viewing the cards on the board easy. I've found in the past that if you're at one of the ends, it can be difficult to see the suits and even occasionally the numbers of the cards. I was 2 from the dealer position on the first hand and posted to get started right away. AQo ... nice! An ace came on the flop. A short-stack in early position went all-in and one other person besides me called. I bet out on the turn and the other guy called that bet, which was fortunate, since the shorty rivered 2 pairs with his A6 so I only won the side pot.

It's funny, in my first 7 hands I got AQo, AQo, xx, AJo, AA, xx and JJ. My $200 buy-in went up to $550 in the blink of an eye. I joked that I'd now seen all the good hands I'd get for the rest of the day and, unfortunately, I was right. Over the next few hours, I managed to give back about half my winnings before I finally picked my remaining chips and headed off to the casino to find a craps table.

In a few minutes, I located a busy craps table that had a spot for me to sneak into next to the stick man (the dealer at the table who holds the stick to move the dice around and who controls the action). The first few folks who rolled the dice did okay, so I made a bit of money. The next shooter was a crazy guy (there's one at every table, it seems). He bet $100 on the pass line and always slowed down the action putting his place bets as he gave poor instructions to the dealer, so there was always confusion to resolve before the game could get moving again. He was a generous soul in an obnoxious way. Every payoff he received, he threw the white ($1) chips back into the center of the table, shouting "dealers!" Great for them to get tipped but a pain for them to retrieve the chips that have knocked other chips around and such. At one point, he took a handful of pinks ($500 chips) out of his pocket to cash one for smaller chips. At least $10k there.

I have a love/hate relationship with rolling the dice. To me, it's all random. I don't carefully position the pips on the dice in certain patterns like some folks do. I just pick them up and throw. I'd guess my experience with dice throwing is similar to everyone else's. Sometimes I completely suck. Based on averages, you have to 7 out immediately after setting the point over 15% of the time. Sometimes I am awesome. I had a roll at the Rio in Las Vegas that I recall where my name was being chanted before every roll. It went on for more than an hour and I made myself well over $1k. Oh, and made everyone else at the table a load of dough. My first roll last night was better than average. I made a few points and the third point I set was the 4, which is hard to make (as in, it's twice as hard to roll a 4 again before rolling a 7). I kept rolling 5's, 6's and 8's, all of which was making us money on place bets. Finally, I sevened out without every making the 4 point, but I'd made all of us a good amount of dough.

I played craps for 2-3 hours and managed to leave with a decent amount of winnings. Not the most of the night, but not at the low point. In fact, thinking about it, since I won the side pot on my first hand at holdem, I had no point during the day where I was losing. Nice!

Getting the car from valet was a snap. I'm doing this if I ever go again. Got out onto the highway. Put on Miles Davis. And headed home. Almost all highway driving. Home about 10:40. It was a fun day and a chance to really get away from the chores and responsibilities of my typical day. I've already suggested to Skip that another trip in March would be fun.

Winter's Finally Arrived

Since the October Nor'easter, we hadn't had any snow up until yesterday. Yesterday, we picked up a couple of fluffy inches. Today, starting before dawn, we got more snow. All told, it probably amounted to 3 more inches. With the combined accumulation, I figured that meant it was time to pull out the snow blower.

Last winter was my first winter being unemployed. I took a look at our expenses and identified a bunch of ways to cut costs. One expense was snow plowing. I figured I could handle the driveway if we bought a snow blower. I'm not handy at all, so I didn't want a big, gasoline-powered snow blower that would need to be maintained and breakdown regularly. I found a great little Toro electric snowblower and bought that along with a long extension cord. It paid for itself about halfway through last winter. For the snowfalls over 8", it took two passes to take care of the entire driveway, but we don't get many storms that pile up that much snow.

This afternoon, when the snow finally tapered off, Addy and I went out while I shoveled paths and pits for the dogs. Then, I coaxed her into the house (for a little tiny dog, she really loves the snow) and pulled out the snowblower. This turned out to be the perfect snowfall for the first effort of the year. Not deep and very powdery. All the routines and approaches I'd figured out last year came back quickly. It was a pleasure to get outside in the clear, fresh air and take care of the driveway. And, of course, the snow blowing counts as exercise in Weight Watchers!

Chillin'

This is one of those rare days when there's no one coming to the house for Skip. No nurses, no aides. Just us chickens, chillin'. We're taking advantage of this quiet to help Skip calm down a bit before the surgery on Friday. She is getting more nervous as each day brings us closer. I'm not sure which is bothering her more, the surgery or the time in the hospital afterwards.

So, Skip has asked me, in the interests of soothing her, to do some things that I hate doing but are important to her. Tops on this list is putting out bird seed. Next will be packing up the things she wants to bring to the hospital. Normally, I'd do that on Friday morning as that's my style, but Skip is most comfortable doing things in advance. It'll help her obsess less about what needs to be packed if it's all taken care of today.

Even being nice and doing this stuff, I'll still have plenty of time for myself to relax, exercise and put up some items on eBay. Sales have really lagged since Christmas and I need to put some items up that will bring in some dough. Gotta love that chillin'.

A Quiet Christmas For Us

We've got a low-key Christmas going this year. No big parties here at the house. And, we aren't giving each other too many gifts, unlike years past. We have so much stuff, it's hard to rationalize spending money on more things we don't need. This is sad for Skip because she is a great gift-giver. Picks out great things to give me. She's also a great gift-picker, finding things for me to give her!

On Christmas day, we're having brunch with my mother at her new home. She sold her house on the Cape this fall and now lives in a very nice independent living apartment in central Massachusetts. (She's encouraging us to move there, but we're still 7 years from age eligibility.) We went there for Thanksgiving and the brunch was very good; we're expecting another good meal on Christmas. Then, we'll head back to her apartment to exchange stockings and visit. She'll let me put football on the tv. My brother's son got married this fall, and that nephew and his wife will be stopping by for a visit since they're heading off on vacation the next day.

On the 30th, we'll be getting together with my mother, my siblings and their kids for a family celebration. We'll be having this shindig at my mother's place, where they have a private dining room for family get-togethers. My brother's 3 kids are all adults now and my sister's two sets of twin boys are 16 and 20. I'm not very good with kids, so it was hard for me to chat them up when they were young. Now, I enjoy their company very much so these get-togethers are really fun for me. The fact that we'll be at my mom's and none of has to cook or clean up is just an added bonus.

We used to host a party for Skip's brothers who live in the area and their kids and grandkids but we skipped a year some years back and never brought it back. We will be seeing 2 of Skip's brothers and a sister-in-law for dinner in early January, though.

Even though we're not exchanging a lot of gifts, we're not completely done. Guess I'll have to get out today or tomorrow and finish up!

October Nor'easter

Suffice it to say, we don't get snow in Massachusetts in October. We barely get it in November and often don't even have a white Christmas. Turns out it's a good thing we don't get it that early. When heavy, wet snow lands on trees still filled with leaves, trees and limbs fall on power lines and lights go out.

For us, the power went out at 3am on Sunday, October 30th. The storm had started early on Saturday evening. We only got a few inches of snow, but it was very, very wet. We kept the heat up higher than normal through the night just in case we lost power, so the house would stay as warm as possible. Skip has a low air loss mattress on her hospital bed to help with her pressure sore. To stay inflated, the mattress requires electricity. We have a battery backup that lasts for about 80 minutes. From previous outages, we knew it wasn't too uncomfortable for her to lie in the deflated bed for a number of hours.

When we woke up in the morning, I figured we'd need to book a hotel room as soon as possible, before they were all taken by others in the same situation. We could always cancel before the evening if the power came back on. Here in the suburbs of Boston, there are plenty of hotels around like Courtyards and Embassy Suites. The first handful I called either didn't answer or answered and said they had no power. On the fourth try, I found a place with rooms and power but they didn't take dogs; fortunately, they had a sister property nearby that did.

We still had hot water (thanks to gas heat!). Skip's aide came in the early afternoon and bathed her, dressed her and got her up. The aide had a hard time getting to our house because there were trees down all over the place including multiple trees down on the street just before ours. Multiple lines were down. From that, we knew it would be a long while before power came back on.

With a fully packed car (boy, the disabled sure need a lot of crap to get through the day. I used to take multi-day trips for business with just a rolling suitcase that fit in the overhead compartment on a plane. That suitcase was about 1/10th of our load.), we drove over to the hotel. The setup for guests with dogs was excellent. Our room was on the ground floor with a second entrance out the back leading to plenty of space for dog-walking.

The room itself was great. Plenty of space to get around with the wheelchair, nice furnishings and quite clean.

At home, we have a system for transferring Skip installed in the ceiling of our bedroom. We also have a Hoyer lift that a friend gave us after her mother, who had MS, died (we used to have a manual one, but this baby had power!). At bedtime, it worked like a charm for the transfer at the hotel, able to get Skip up plenty high to get onto the higher than normal hotel bed.

I don't know how Skip is so brave, allowing herself to be hoisted up for transfers. She is so accepting of this stuff, never freaking out. She's calmly handled a crew hauling her in her chair up a flight of stairs on more than one occasion. I know I wouldn't handle it with such grace. At home, these transfers are old hat, but this definitely was not. So, we walked through each step of the transfer beforehand. Just knowing what's coming makes things easier for her.

We ended up staying 2 nights at the hotel. Ruby, who is a mellow dog, settled right in. She spent her time chilling on the bed (after just a short bit of sniffing around when we first got there) and was fine going out on a leash. Addy, not so much. Lots of investingating. Wouldn't pee when I took them out. Once she lasted 16 hours before finally going. Barking when she heard noise out in the hall. Slowly but surely, she got used to her new surroundings.

On Tuesday morning, we knew we wouldn't be able to stay another night as the hotel was fully booked. Power still wasn't on at home, though the power company web site said our town's power should be restored everywhere by midnight that night. We decided we'd head down to the Cape and stay at my mother's house overnight. My mom just sold her house and was moving on November 3rd, so I needed to be there, helping her, my sister and brother pack up. This also was a chance for Skip to get one last visit to the house that had been my parents' home for 20+ years. The last time there for her was a short visit after my father's memorial service in June 2010. We hadn't stayed overnight in years because, though accessible, the guest bedroom and bathroom were hard for Skip to manage. With the Hoyer, we'd be able to handle it.

We ended up staying two nights even though the power came on at home Tuesday evening (when the answering machine answered the phone, I knew the power was back). I was able to spend a lot of time packing and Skip got an extended visit with my mom.

I'd rather have not had to spend the money on the hotel and restocking the refrigerator, but otherwise, this turned out to be a fun change of pace. We haven't traveled since our 2-week vacation in Maine two summers ago. Skip's now more disabled, primarily due to her 5+ week hospitalization from her bone infection in late 2010. I'd love to be able to travel again. This short stay in a hotel proved we can do it successfully. Skip spends a lot of time in bed and only gets out about once a week, so this was a great chance for her to getaway. And, Addy isn't very good with new people. She barks, she has submissive pee issues. In the 4 day period of traveling, she met lots of new people and experienced lots of new things. Since getting home, when we send her outside to greet the nurses and aides who come to the house, she's not peeing as much. Let's hope this trend continues.

Dreaming of all those different places we might go to ...

Off to Cape Cod

I'm heading down to Cape Cod today to visit my parents. It's a two-hour drive each way. The typical schedule, when I used to drive down every other week (not since Skip went into the hospital), is to leave here around 1pm, get down around 3. I do a few things to help out with bill paying and such. We'll have a nice dinner together. I leave around 8pm and get home around 10. I always enjoy visiting with my parents and they love me visiting, too.

Meanwhile, back at the house, MW will come over and spend the day with Skip. In good weather, they'll sit out on the patio and smoke and chat. MW will grill something for their dinner. They'll have an excellent time. We've planned that I'll get Skip up and out of bed, settled in her wheelchair, before I head out. MW can transfer her back into bed if and when she gets tired out.

Today, the weather is expected to hit the low 70s F and the sun is shining brightly. The iPod is charged and ready. Should be a wonderful day for a drive.

Spring Weather is Here

Yesterday, Wednesday, brought lovely weather to us here in Massachusetts. It was sunny and warmer than than we'd seen yet this year, I think it got to the low or mid 60s F. Skip thought it would be a perfect day to get outside and take in the fresh air, then stink up that air with a cigar!

I got Skip up and ready around 1pm. MW arrived shortly thereafter, and the two of them went out for relaxation on the patio. They set themselves up in a sunny spot to relax, chat and smoke.

Checking out weather.com, I see we're in for mid-60s temps and no rain through the weekend. Nice! That'll make my drive to Cape Cod to see my parents a pleasure.

Another Step in the Right Direction

Sunday afternoon we had dinner at our favorite Vietnamese restaurant. Woo hoo! It's been a long time coming, but Skip finally got there. We went with another couple, D&D, the folks who introduced us to the restaurant. We love them and their company and, for a good part of last year, every other Sunday afternoon found the 4 of us together eating Vietnamese. It was such a pleasure to be back there again.

Skip always gets the same thing. Papaya salad with shrimp and a spicy dressing; summer rolls with chicken and a sizzling beef and onion dish for the main course. I, too, love that Papaya salad, which I had followed by my standard: a huge bowl of chicken soup with tons of fresh vegetables. The soup is always served with a side dish of fresh mung bean sprouts, basil and another green I can't remember, along with sliced jalapenos and lime. Mmmm-mmmm, good. (In the spirit of full disclosure, I find the fresh jalapenos too spicy for me, so after the initial try of adding them to the soup, I leave those spicy suckers alone!)

Skip held up well and wasn't too weak. She did have one issue with the restaurant's silverware. Since her stay at the rehab hospital, she's been using silverware with built-up handles. We forgot to bring some with us and have made a mental note to do so when dining out in the future. Since she had some trouble with the utensils, I helped feed her part of the dinner, to make it easier for her. Although we were in a restaurant with other patrons nearby, she didn't seem self-conscious at all that I was feeding her.

After dinner, we headed back home, bellies full and happy for our venture out for good food and a visit with great friends. Once home, settling Skip back into bed, it was great to feel that she'd taken one more step back on the path to feeling human again.

Try a Little Tenderness

Who knows why certain moods overtake us? I do know that my general tendencies towards good moods are in the morning, bad moods at night. Well, this morning, I was in a wonderful mood and that extended into strong feelings of tenderness towards my wife.

Skip's really been having a rough go of it lately, as her pressure wound has escalated over the last 1-2 weeks into a serious problem. It's got her freaked out, as I'm sure I've mentioned before (this almost daily posting does tend to create some repetition in my posts).

I got her up this morning and into the shower to start her day. I always help with part of the shower, especially because her arms aren't strong enough and her hands aren't dextrous enough to manage a good shampoo (for her inch-long hair). I was struck with such strong feelings of tenderness and a desire to take care of Skip while helping with her shower. MS is such a sucky, horrible disease. It has taken away so much from her and she needs so much as a result. I was glad I could be the one to help.

Stop the World!

Warning: drivel ahead!

I had a brief period of overwhelmingness today. I had a good sense of what the day would bring and then a curve ball got thrown. Skip's aide, MW, had talked yesterday about not coming today because she was trying to get packed for moving this weekend. As a result, I thought the day consisted just of work, with only my brother coming to do some home maintenance. No nurses, no MW, no physical therapist. All in all, that seemed pretty quiet.

Late morning, MW called and said she'd like to work 1-5. Skip was thrilled. That would get her outside on the patio (it was a lovely, warm day here), a visit and a cigar smoke. I was not thrilled, though. Skip and I had planned that she'd spend time lying on her side in the early afternoon to take some pressure off her wound. That was out. We'd planned on only have one visitor today, my brother. That was out.

Suddenly, this change in plans had me completely overwhelmed. Not for any good reason, but just because it was a change. But, I didn't crank out. Instead, I gave myself a time-out. For about 15 minutes, I sat in the living room and wasted time on my home computer. I completely separated myself from the day's pressures. It did the trick as I was able to climb back into the day's responsibilities and routines and get through it all without descending into a bad mood. In fact, I ended up appreciating MW's presence as she took care of a lot of household activities (such as empty diswasher, fold laundry) that would have been part of my routine instead.

I have to watch out for tomorrow, though. We're having 4 new appliances delivered and partially installed (gas appliances being installed by a plumber on Friday), MW, the house cleaners, my brother and a full day of meetings. Oy! I'll have to be on my guard for crankiness! (Actually, I've already come up with ways to settle myself into a "cone of silence" so I can work away from all the chaos. Wish me luck!

Circle of Sh*t

I used to often ask Skip "what's wrong?" I'd know she was in a gloomy state, but wasn't sure of the root cause, so I'd ask. I thought this was a good way to start a dialogue to see if we could work together to battle the problem.

 Skip wouldn't want to talk about whatever the problem was, though. Nine times out of ten, the cause of the problem would be one of a small set of things, such as her increasing disability, her mobility issues, her prognosis. You know, all the kinds of things someone with a chronic debilitating disease would worry about.

 She just didn't want to talk about this stuff. But, I continued to ask. (I am just a pest, I guess.) Because she didn't want to talk about the MS stuff that was bringing her down, we ended up getting into small tiffs when all I was trying to do was help out. Eventually, we came up with a shorthand way for Skip to say what was bothering her to short-circuit this bad pattern, "circle of shit." If I'd ask what was bothering her, and she said it was circle of shit, I knew what the root cause of her bad mood was and I could be supportive without being invasive.

 It's amazing how just having this exspression we were able to defuse any issues created by my trying to poke at Skip's grumpiness/sadness. Often as not, we'd end up laughing about the circle of shit saying and Skip's mood would lighten.

 I realize we haven't used the "circle of shit" saying in quite some time. Over the years, Skip's overall attitude and outlook on life improved to the point that she doesn't get as gloomy as she once did. In fact, my mother frequently comments on how positive her attitude is.

Shopping Therapy

Skip is having a rough day. The pressure sores -- their presence, their pain and discomfort -- have her a bit freaked out. So, we're going out for a bit of shopping therapy. And what will we buy? Why, appliances!

Our oven is about 25 years old. The pilot (or some part of it) died at the beginning of the summer. We've had this repaired before and it cost a good bit, as Skip recalls (I have a memory like a sieve for those kinds of facts). We kept vacillating between repairing it for the umpteenth time or just breaking down and buying a new one. After comparing the cost of repair vs the cost of a new one, we've finally decided that it's time to buy a new one. With the cold weather now here, we're ready for some roasted chicken so we must have an oven!

The clothes dryer is well over 20 years old. The last time we had it repaired, the repairman suggested we buy a new one when the next thing went wrong. The clothes washer is just over 20 years old. It's never been repaired as far as I can remember, but it's starting to have troubles with the spin cycle. I have read that front-load washers are more energy efficient and clean clothes cleaner; I'm having a bit of a yen for a front-loader.

I read this morning that the federal government has a program for household appliances similar to the cash for clunkers program for cars. If you replace your current appliances with items that are energy efficient, you can receive a rebate between $50 and $200 (or was it $300?) from the feds.

It sounds like a three-fer in the appliance department. I guess it's a sad story of my total domesticity that the prospect of buying a washer, dryer and oven all have me pretty excited. And, Skip loves, loves, loves to shop ... even for appliances. So, we'll all be happy. Well, except for the pups, who will be together in their crate while we're out.

Special Appreciation

Earlier today, I was getting Skip dressed. Part of that routine includes care for a pressure wound she's developed. Her wound nurse recommended a new approach in caring for it. We started today to use a Dakin solution, which requires packing the wound with gauze soaked in a diluted bleach solution. Yes, regular Clorox bleach is used to help clean the wound to create a better bed for healing.

Skip was nervous about the bleach. She worried it would hurt. The wound nurse had assured her that some folks notice stinging when first applied, but it's not a painful solution. Still, bleach was freaking her out.

Whenever I'm doing something for Skip's care that she can't see, I tell her each step as I'm about to take it so she knows what's coming. Today, I explained in even more detail than usual so she'd be right with me as we tried out the Dakin solution.

When the bleached gauze was in place and a gauze covering taped on, she told me that I take great care of her. At times like this, when we're trying something new that's got her a bit freaked out, she is comforted by how much she can trust me and knowing that she's in good hands.

That made me feel great.

Oh, and by the way, she's noticed a bit of stinging, but not a major problem. That's good, because it gets applied twice a day!

Vacation Hopes

We leave for vacation on Saturday. We're spending two weeks in Maine at a house on a lake. There will be six of us in the group.

I'm anticipating a wonderful time will be had by all. We've traveled with 3 of the other 4 women in the group, so know we're compatible travelers. I'm hoping we've emerged from the continuous rain and clouds that has been the dominant weather pattern here since Memorial Day (end of May) until late last week. This way, we'll have most days where we can relax by the water, rather than spend too many days doing rainy day activities such as Wii or shopping.

Skip is planning on getting some time in the water. She hasn't been "swimming" in about 4 years and I think vacillates between excitement and terror at the prospect of getting into the water. Our last experience with it was very fun for her, so I'm hoping it all goes well and she gets to stick her head in the water (she has mask and snorkel purchased) to observe a slice of life in the lake.

One reason I purchased the patient lifter I wrote about recently was to get Skip in and out of the water. Like all new things we attempt, I expect the first time using the patient lifter (with sling) will not go perfectly. I'm hoping we'll have plenty of opportunity while there to perfect the entry/exit from the water. A lot depends upon the lay of the land, the terrain at the water's edge, so we'll have to figure it out when we get there.

We haven't taken a vacation like this in our 27 years together. Before, we've always stayed in hotels or in staterooms on cruise ships. I'm very much looking forward to the more relaxed situation this house will give us. No need to get up and dressed and ready for the day before getting breakfast in some restaurant. Or paying top dollar for room service if things are jelling slowly in the morning. The place we're staying will be an integral part of the vacation, rather than a convenient place to hang our hats so we can head out to shop, gamble or sightsee (the three primary activities while on previous vacations).

I'm sure Skip will get itchy feet and want to head our for some shopping excursions. And, she loves the ocean, so I expect we'll have a drive or two along the coastline; we're only about 30 minutes, I'd estimate, from the ocean. In my limited experience, most Maine beaches I've seen are rocky rather than sandy, so not sure if we'll happen upon a spot with a firm boardwalk where she'll be able to get close to the water in her wheelchair.

I'm not much of a drinker, but when I do drink, I love beer with oomph and black russians. I'm expecting I'll partake of both a bit. I know we'll eat well in Maine. One of our friends was a chef who had her own restaurant for a number of years, so she can be counted on for great meals. But, we won't make her do all the cooking! I'm looking forward to doing some cooking as well. Cooking for an appreciative group, with others to join in the prep, will be a lot of fun.

Skip loves to smoke cigars. We've got a good supply to bring with us. I'm sure she'll have great fun sitting by the water smoking. (I just have to stay upwind.)

I know we'll have some challenges there. How will the bathroom be set up? What will we need to modify in our routines to deal with its layout? How will the patient lifter work for getting Skip out of bed, into the shower and the like? I'm anticipating we'll get all the solutions and new routines worked out the first few days so we can settle into a lovely couple of weeks. It will require some flexibility on our parts, but should payoff with a great dividend: a wonderful and relaxing vacation.

Attitude is Everything

I started this blog about 3 months ago. I was in a bad place at the time. It had taken me many years to get there, but I was feeling restless, dissatisfied with my life, fearful of the future as a caregiver to someone with a progressive disease, wondering "is this all there is?"

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.

My Baby's Under the Weather

Skip's caught a cold or is reacting to the heavy layer of pollen we have laying over everything. I feel a sickness like this is adding insult to injury, where she's already so impacted by her MS.

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.

On a Short Vacation

Took Wednesday - Friday off this week and the US celebrates Memorial Day on Monday, so getting a nice stretch of time off without using too many vacation days.

Wednesday was a perfect day. The weather was absolutely perfect --sunny, low 70s F. MW, Skip's aide, took her out to get a hair cut and take a trip to Home Depot. While they were out, I started to make some headway on the home to do list. When they got back, they sat out on the patio for a bit to have cigars (Skip's number one vice). After a while, I sat and visited with Skip. No pressures, unbelievable weather, our anniversary. Just lovely.

Yesterday, friends from Ontario arrived. They'll be with us until Monday morning. It's great to see them; it's a drag they live so far away.

Today, we're heading into Boston to walk part of the Freedom Trail. The Freedom Trail is a path that links a dozen or so historic sites in the city together. It starts in the Boston Common (which is a large park in the center of the city), goes to the State House, on to some historic churches and so on. As a long-time resident of Boston and surrounding towns, I, of course, have never walked the Freedom Trail. I'm looking forward to it. I've never been inside most of the stops along the way but have driven or walked past most all of them hundreds of times.

Surprisingly, the Freedom Trail's website does not give mention to handicapped accessibility info on the buildings included. I am cautiously optimistic that these historic sites are accessible. (Of course, I remember on our trip to Washington, DC, the elevator at the Lincoln Memorial was broken and Skip couldn't get up to see the amazing Chester French statue of Lincoln.)

One fun thing we'll do at the start of the day is walk through the Public Gardens (which are next to the Common). It should be lovely this time of year. Skip especially loves spending time in the Public Gardens and Boston Common because the squirrels are very tame. If you have peanuts for them, they'll come right up to you for the treat.

We have a slight chance of showers forecast for today. We'll bring our umbrellas, but I'm cautiously optimistic we won't need them. Today should be quite a treat.

Calming Force (CF)

I write a lot about the cranky side of caregiving, but there's a bigger, loving side to it that deserves mention here and there. After all, if I didn't love Skip and she didn't love me, why would we be in this caregiving/caregivee situation?

One of the loving things I can do for Skip is help to calm her nerves. She does tend to get nervous about things and looks to me to help be her Calming Force. In fact, it happens frequently enough, that we have a shorthand term, "CF." Often, when we're going to be heading out Skip gets nervous, worrying about the bad things that might happen. MS is such a terrible disease. All the things it screws up in your body just help to sap your confidence and feelings of security when you leave the safe confines of your home.

How do I calm her down? Basically, I'm certain we can deal with whatever happens, and can assure her of this with confidence. It might suck if whatever's she's worried about happens, but if it does, we'll just deal with it, and we have.

It makes me feel great when I know that I can care for not just her physical needs, but her mental needs, too. After I've helped her calm down about whatever's got her nerved up, and she calls me her "CF," I'm happy.

It helps to make up for some of that crankiness she has to put up with.

Note: just read this post to Skip and it gets her seal of approval!

I'm Not Always Cranky: Savor the Small Stuff

I realized my first post on this subject was very general, focused on the "macro" rather than the more "micro," or day-to-day, reality.

Our lives really center around our home. I work at home, as I've mentioned, so I'm here ALL the time. Skip generally leaves the house only once a week on average. Fortunately, we have a lovely house that is set up pretty well for a wheelchair user.

Skip is generally a good-natured person who, despite all the damage of MS, maintains a very positive attitude most of the time. We love to sing to each other, to the dogs, to the air. Lots of singing in the house throughout the morning (especially when I don't have a conference call going). The songs are just nonsense about whatever is currently going on; sung to the melody of a few specific songs, such as "Winter Wonderland." When I'm not displaying some of the crankiness this blog talks about, we get along very well and love each other's company. Even after all these years, she's the person I most want to spend my time with.

The dogs add so much joy to our lives. Total and utter love given by them and to them. They love to be with us and with each other. But, they have very different interests. Sally is totally focused on the creatures outdoors, having certain spots in the house to spy them. In the warmer weather, she is constantly at the kitchen door asking to go out to try her hand at squirrel chasing. Ruby is a total couch potato all day, looking for things to eat and chew but otherwise relaxing in her bed next to Skip's wheelchair. At bedtime, she comes to life, picking a toy for us to throw during our evening "get Skip into bed" routine.

Lots of love in the house. And, isn't that what it's all about ... giving and receiving love?