The New Ride

2016 Subaru Legacy, with the Toaster sitting behind it

We've had the Toaster since August 2005. It's had very few issues mechanically. We have to keep an eye on the modifications (lowered floor, ramp, etc.) because they rust, so we've had some work done on the mods twice to keep the rust under control. But, it has 128,000 miles on it. We want to keep it as long as possible - replacing it would mean getting a minivan (bah!) and having that modified; a new one would cost $50,000+. Some car manufacturers (like Toyota) will allow you to finance such a vehicle for 10 years, but, sorry, I do not want a big car payment for 120 months. 

Over the last year, I've been taking my mother regularly to various doctors. She's 87, stopped driving and sold her car last year. The MD trips require that I rent a car because she has a few mobility issues and can't get up the Toaster's ramp and into the back seat. I have loved driving these rental cars. They ride much more smoothly than the Toaster, which is pretty crappy in bad weather and blows all over the highway in the wind. They have fun technology upgrades like rear view cameras and bluetooth connectivity. They get better mileage. And, perhaps most importantly, they have cup holders! The Toaster doesn't have a center console where you'd find the cup holders as it had to be removed to make space for the wheelchair well. 

I thought, then, why not get a new car with a relatively low monthly payment? It would take care of the rides for my mom, reduce mileage on the Toaster and be fun to drive. I also wanted 4-wheel or all-wheel drive to make winter driving safer. I consulted with my brother, who is incredibly knowledgeable about cars. I wanted your basic mid-sized sedan that would be easy for my mom to get in and out of. Apparently, the only such vehicle on the road (at least in the base trim level) was a Subaru Legacy. Ford Fusions AWD, but you have to pay for more than the basic car to get it. Nissan Altimas, Toyota Camrys, etc. don't have AWD or 4-wheel drive. Also, my brother and his wife and 2 of his kids all drive Subarus of various models and love them. 

I made an appointment for a test drive at a nearby dealer with the stipulation that I could bring the car over to my mom's house so we could make sure she'd have no problems getting in or out. Loved the car and it worked for her. Yay! Made a deal that day to lease it for 3 years. I picked the car up on April 30th and have loved driving it the last 2 weeks.

I'm getting 31 miles to the gallon and I can go almost 500 miles between fill ups. With bluetooth, I can make and receive handsfree calls right from the dashboard. I often listen to audio books while driving with the books on my phone and that's a snap with the bluetooth. The handling is so much better than the Toaster's and it feels really sure on the road in the rain. No snow yet, but I'm sure it'll be much, much better this winter. 

So far, the only problem I've experienced is a recall email 13 days after getting the car. Apparently, some new Legacys have a poorly constructed steering column and it can cause the wheels to stop turning when you turn the wheel. Yikes! The email states not to drive the car and have it towed in, but the dealer is slammed and suggested I drive it in on Monday to be checked out. If the problem does exist, I'll get a rental to use until the repair can be made. I'll be glad when this is squared away, but at least I have the Toaster to use until Monday. 

Recall notwithstanding, it has been fun to drive and have this new car!

Caregiver Aids #19: Handsfree Smartphone - UPDATE

Front view of Skip's wheelchair (sans Skip) with Moto X Pure phone mounted on stalk

View from the back (note: the fabric on the chair's headrest pulls Skip's hair so I got her a shower cap as a cover. Problem solved.)

Yesterday, after writing my last post, I dug out Skip's phone and got it charged up. 

This morning we tried a few things out with it. Skip said, "listen up, Moto," and it beeped to life. First, she called me. The call went through and it defaulted to speakerphone so Skip could hear me. Great! Then she called HM, her primary aide, to wish her a happy birthday. Worked like a charm as well.

But what about answering the phone? Sometimes when I go to Foxwoods, I leave there pretty late. I call her when I'm on my way home so she knows when to expect me. It would be great if I called her cell and she answered ... most of the time she can't get the buttons to work to answer our landline phone so this would be an excellent alternative. Only thing is, you can't seem to answer the phone without hands. There is a command, "talk to me," that notifies you for the next 30 minutes of any texts or calls you get. We'll see if that allows her to answer, but obviously it's bound by a time limit and of only limited applicability. Worst case is, when she can't answer the phone, she can wait for it to stop ringing and just call the person back. .

Now, it's on texting.

Caregiver Aids #19: Handsfree Smartphone

I did a caregiver aid entry (#15) for a panic pendant, which Skip had for a number of years. I canceled it some months back for 2 reasons. First, I doubted Skip would be able to press the big button on the pendant hard enough to trigger a call out for help. Second, they raised their monthly monitoring fee without giving us any warning, which is just terrible customer service.

So I needed to find an alternative for her to use in an emergency. But while I was at it, she also could use a tool that would allow her to make calls, send text messages and control other devices, such as the tv (since the remote is very, very difficult for her to use).

I thought a smartphone was a no-brainer for all of this. I wasn't sure which phones really had handsfree operation, so I thought we could benefit from someone with more technical knowledge. I called Easter Seals to see if they had someone who could help us identify Skip's requirements and find a tool or tools to meet them. They sent someone out who decided that Skip's computer was the best way to go, even though I disagreed, since she wouldn't be able to use it when she was lying in bed. Nonetheless, he tried out a head mouse, which allows you to move your mouse around the screen with head movements, which Skip didn't like. He tried out Dragon Naturally Speaking with a microphone, which Skip had trouble with. She'd do all right with the commands when he was here for training and then they'd drop out of her brain after he left. D'oh!it l

It looked like the research for the handsfree phone was back in my court. I use a Motorola Droid Mini (I love its small size) which does have handsfree capabilities. I can wake it up merely by stating "OK Google" and then give it commands. I can make calls, send texts and find out how old Sophia Loren is (81, if you were wondering). So, I thought all Motorola phones had this capability. Nope. Only Droids and the Moto X. I found this out after buying an inexpensive Motorola phone for Skip. Again, d'oh!

I got her a Moto X. It's a big phone, but that is a benefit for her so she could see the screen if it was mounted on a stalk attached to her wheelchair or hospital bed rail. We trained it to recognize her voice (and her lovely Boston accent) so she could wake it up and give it commands. She did get the hang of it. So she could use it to send texts to me and friends, etc.

Right now, though, she's not using it. I'm not sure what we need to do to motivate her to use it enough so she is comfortable with its features and takes advantage of them. After all, it's only a matter of time before more and more apps are added or improved that will allow her to control more through the phone -- such as the cable box, which will give it even more utility for her.

Yesterday, I saw a cute ad on tv with Cookie Monster advertising that the iPhone 6S has handsfree capabilities. Before, you could use Siri in handsfree mode, but first you needed to wake up the phone with your hand to do so or it had to be plugged in (I guess listening for "Hey Siri" used up a lot of battery). For that reason, I didn't consider an iPhone when looking at possible smartphones to get Skip. Looks like that may have changed for those trying to figure out what's possible today.

I'm getting out the Moto X and charging it back up for Skip to practice on and use. We're going to Atlantic City in 3 weeks and she'll need to have a device to reach me when she's in the hotel room alone at night. She goes to bed early (can you say 8?) and I'll be up for hours more being a degenerate gambler in the casino. I want her to have a way to reach me should an emergency arise.

In summary, today, your options for handsfree smartphones are: Motorola Droids, Moto X and iPhone 6S. This list will only grow longer, I am sure. I do see the smartphone as a great tool for Skip, and she claims to as well, we just have a few hurdles to get over first.

Do You Give Money to the Homeless?

Years ago: no.

Today: yes.

Years ago, I heard a piece on the radio driving to work about giving money to panhandlers. The story's main point was that some huge percentage of panhandlers were going to turn around and use that money to buy drugs or alcohol. So, I believed that giving a homeless person money would actually hurt them more than help. I felt uncomfortable passing by someone asking for money on the street and not giving them something, but at least gave them respect by looking them in the eye and saying, "sorry, but no."

Then I stopped working in Boston. I stopped running into panhandlers quietly saying "spare change" as I walked down a sidewalk because you don't see that kind of thing where I lived in an affluent suburb outside of Boston.

Now, we live in Worcester. During our first winter here when Skip and I were out one evening, we stopped at a convenience store. Man, it was cold that day. When I got out of the car, I found huddled in the parking lot a young, homeless man and his 2 dogs. He asked me for money ... how could I refuse? I gave him $10 and we chatted briefly about his dogs. I felt good, feeling that I was helping him and his dogs. Hoping he'd be okay, that they'd all be okay, and that they'd all get something to eat because of my gift. Skip, too, thought it was great that I'd given him some cash.

I couldn't stop thinking about that young man and his dogs. Over the next few weeks, I drove around in the area of that convenience store, hoping to find him and see that he was all right, give him some more money, pet his dogs. Not surprisingly, I was never able to find him.

But that encounter changed my attitude about panhandlers; I wanted to help them directly. You often see homeless folks with cardboard signs asking for money at many streetlights around the city. If I stop at the light and there's sufficient time to give them so dough, I do. They are always appreciative, thanking me and saying "God bless you" (being an atheist, I could live without that, but I understand where it's coming from). Sometimes we have a minute to chat before the light changes.

So maybe some of that money does go to drugs or alcohol, feeding the addiction. But I know some of it goes to food or shelter or other necessities of life lacking for that soul. Were I to make a donation to a charitable organization helping the homeless, I know some of it, perhaps a lot of it, would be siphoned off for fundraising costs, administrative costs and so on. Here, the $10 or $20 I pass out the window of my car goes right to one person who needs it.

There are far too many homeless and with milder weather upon us, I see more and more of them. I wish I'd never see a cardboard sign asking for money again. But, as long as I do, I'm willing to help. I have so much, why not pass on a bit to those who need it far more than me?

Sunday Cooking

On bullet 12 in the list of 27 from my last post, I mentioned that we've changed our eating style. You could call it Paleo, but, for me, it's stricter than that. Most importantly, no added sugar, dairy or gluten. My sister also eats this way, and her sons to some extent as well (she has 2 sets of twin boys). Her younger sons go to college here in Worcester, so I do some cooking for them as it's hard to eat cleanly out of a school cafeteria.

On Sundays, there's a whole mess of cooking done here. The goal is to cook 3 dinners for my nephews along with smoothies for them for 2 breakfasts. We cook enough so that we also get 3 meals out of it and my sister gets some as well. Today's menu is:

• Chicken breasts with garlic, fresh basil and sliced tomatoes over zucchini noodles (aka zoodles) and diced tomatoes sauteed in olive oil and garlic.
• Corned beef and cabbage (Skip is 100% Irish and there's no getting away from a boiled dinner around St. Patty's day) -- though it will be hard to find corned beef that isn't full of nitrates and nitrites. Skip insists this must include rutabaga turnip, most definitely not a favorite of mine. 
• Curried chicken and coconut soup. 

I'll also do up some extra vegies as separate dishes for my sister and me. I've been on a rainbow chard kick lately, so likely some of that. Also, I'll do something roasted like parsnips or sweet potatoes. Or green beans, or whatever I can find at Trader Joe's in the organic section. 

Finally, I'll cook up some chicken breasts so I can make chicken salad for Skip and her aide HM for dinner on Wednesday, since I'll be heading to Foxwoods for the day. 

Speaking of HM, she's here all day with us on Sundays to take care of Skip and help with all the cooking. She really enjoys cooking with me and I with her. It's always more fun to cook when you have company, especially company that will wash the dishes!

It's funny how much I enjoy cooking now. I used to hate it. In the early days of our life together, Skip worked for a time as a chef in gourmet shops and a restaurant. Fortunately for me, she was willing to cook at home as well, so I got to avoid cooking. As her mobility and dexterity declined, she lost her ability to stand in front a hot stove and cooking either landed at my feet or we got takeout. So, I did a little cooking unhappily and we ate a lot of takeout. 

Now, as a retiree, I have a lot more time so I don't resent spending it in the kitchen. And, I find that cooking is a real creative pleasure. I get to have control over what I eat, can be creative and try out lots of new dishes, and, when I'm done, there's an excellent meal to enjoy. 

Posting Again, I Think

Cranky and Skip a couple weeks back

Lately, I've been thinking about this blog and how I read lots of other folks' blogs (mostly about poker), so maybe I should bring my Musings back from the dead. I enjoyed it before -- it gave me a good way to organize my thoughts, it connected me with the larger world and I managed to make some friends through it.

So, let's give this a try. First, let's update everyone (all 3 or 4 of you) on our current status:

• We still live in our Worcester, MA condo. We moved here 4 years ago this July. Still loving the place and the location. 
• Skip just turned 60 and I'll hit that milestone this summer. Yikes! Around about the time I turn 60, we'll celebrate 35 years of fun and fireworks together. 
• We are supported in our lives by some great aides. HM has been with us almost 3 years and has most of the caregiving hours. We even take her on trips with us. AI just joined us a few months back, but she is caring, does good work and, best of all, is incredibly reliable. MW, who I've spoken of in posts long ago, still joins Skip 2 afternoons a week. I think she's been with us for almost 10 years. 
• Skip is still a quad but retains some use of her right hand, though not a ton. At least she can operate her computer on her own, but tv remotes and telephones are exceedingly difficult. Forks and spoons are out of the question. Voice operated devices are becoming more and more common, so I suspect we're not too far from a tv remote that she'll be able to control with her voice.
• In an effort to improve our health, we have dramatically changed our diets. There is evidence that eating "clean" can help reduce inflammation and disease for people with MS and it's just plain healthier for me. I lost a bunch of weight changing my diet, got a bit lazy and put most of it back on, but am now back on track. No dairy, gluten or added sugar. Lots of vegies, protein and healthy fat. 
• We are joined in our home by 3 dogs. Ruby is 12, Dakini is 11 and Addy is 6. Dakini is a Shih Tzu and the other 2 are mini-dachshunds, though actually not too mini. I'm sure I'll bore everyone to tears with stories of them going forward. 
• Skip has been a bit bored of late, which isn't surprising, considering she spends most of her days at home, stuck in the same routine. We've been getting out to the movies a lot, so that is a help for her spirits. With the coming warm weather, I'm hoping I can convince her to get outside just to enjoy the air and maybe take a walk around our neighborhood.
• I'm fairly content in my life. I do a lot of cooking, read obsessively and generally enjoy myself. So, probably not too many cranky rantings in the future, but I'm sure I'll come up with a few.
• We still have our Honda Element (aka the Toaster) with the modifications for Skip to get in and out with her wheelchair. It has 126,000 miles on it but has had very few problems during it's 11 years with us. A few years back, we needed to have some rust taken care of on the modifications, but that looks to be under control for now. Fortunately for us, there is an auto mechanic/body shop 2 blocks from us run by a guy that I love and absolutely trust. He takes care of everything on that car since I discovered him 2 years ago and I think he wants it to last forever just as much as I do. I'm hoping we'll get to at least 200k miles with it.

So that's the current state here in the Cranky and Skip household. I look forward to writing posts and reconnecting with those in the blogosphere. Be well!

Caregiver Aids #18: The Hydrant

Hi, all! I see it's been 9 months since my last post. All is well here in the land of Cranky and Skip, except for the inexorable robbing of functionality that comes along with progressive MS. Skip's hands are weakening, slowly but surely, and she is no longer able to hold up and drink from a 12-oz water bottle topped with a sports cap. She's been using that method of drinking water for years and years. I found on allegromedical.com a product called the hydrant:

As you can see, it's a large bottle you fill with water. At the end of the hose, there's a mouthpiece with a small cut in it. The cut opens when you bite down on the mouthpiece but otherwise stays closed. For Skip, we clip the hose to the front of her shirt. Then all she has to do is grab the hose and get it into her mouth to get a drink.

In my opinion, they're expensive for what they're made of -- about $25 on Allegro Medical and a bit more on Amazon -- but they're the only product of their type I've found. Replacement hoses are available for about $7 or $8, which is good, because we rinse the hose every day but don't want to wash it with soap as we'll never get it completely rinsed out.

Skip was resistant to it at first as she hates change and hated how it demonstrated growing weakness in her hands. Now she is totally comfortable with it and uses it both in bed, hanging from a rail, and in her chair, hanging from the back, similar to the second picture, above.

Change

Change is hard. At least, that's what Skip says. And she's right, it is hard. I need something to push me to make a change, otherwise I'll maintain the status quo.

Well, I've got my catalyst. I went to the orthopedist on Monday about my knee and found out a few things. The bony tumor is a non-event. Apparently, these bone growths can happen in your youth when you're growing. Unless the tumor starts to change, indicating it might be cancerous, it's nothing to worry about. But, I do have arthritis in my knee. The doc suggested physical therapy, especially to strengthen the muscles around my knee. He also said I could get a cortisone shot, but I will wait to see how exercising and such helps to reduce the discomfort. If the discomfort continues, I'll think about the shot.

So, it's time to get serious about losing weight to take some pressure off the knee and exercising for general health and strengthening. I joined Weight Watchers Monday evening and went back to the gym on Tuesday. I met with the trainer and got a set of exercises for upper body and core strengthening. She also showed me how to use the quadriceps machine, for leg strengthening.

Weight Watchers has changed their program quite a bit, which is good news for me. It means I can't just assume I know everything about it and be a bit complacent. Along with that, there are some great apps I am using on my smartphone for tracking my eating. It even has a tool for scanning barcodes and determining the Weight Watchers point values per serving. It's good to feel like I am taking control of my eating.

It's also good to be back to the gym. When I was going regularly January - May, I overdid it a bit -- at least for a late 50s, fat gal who's never been a gym-goer before. This time, I'm going to be careful to only go 3-4 times a week and not exercise for more than 30 minutes each time. Also, I'll be keeping close tabs on my knees and how they feel. If either of them hurts while on the stationary bike, I'll either cut back on the effort or stop altogether.

I'm looking forward to feeling stronger and having my clothes start to get looser ....

My Feelings About Caregiving

The way I feel about caregiving is similar to the way New Englanders talk about the weather. We say "if you don't like the weather, wait 5 minutes, it'll change." Sometimes I feel that caregiving is a crushing burden that has overtaken my life making me bitter and angry. Other times, I feel that caring for Skip is a wonderful expression of love and it's great knowing how good she feels when she's lovingly well-cared for. I can experience variations of these 2 perspectives in the space of one conversation.

Lately, I've been mostly on the positive end of the pendulum. I do have a cranky moment at least once a day, typically when I'm tired at the end of the day, but primarily I'm in good spirits and upbeat. This is a welcome change for both Skip and me, since I was feeling darkly, negative and angry for months. (Is darkly a word?)

Another thing I feel as a caregiver is guilt .... What I do feels like it is never enough. I get angry. I sit on the couch playing games on my computer while other people (PCAs) take care of Skip. I'm not disabled and Skip is profoundly so. Of course, guilt isn't a very productive feeling and it can tend to turn me to the dark side. I try to psych myself out of it with a rational, internal conversation. Unfortunately, though, that niggling feeling of guilt manages eventually to pop up again. From what I've read from other caregivers, I think feelings of guilt go with the territory.

I wonder what other people think of caregiving and how I'm doing ...

My Right Knee Hurts

I'm concerned about my right knee. An X-ray showed a "bony lump" on it, so my primary care physician recommended an MRI. Got the MRI on Saturday. (Just as an aside - the term "open MRI" is a misnomer. The machine is not open, it's still a donut where your body goes into the hole; it's just that the hole is bigger than a non-open MRI machine.)

On Tuesday, my doc's nurse called to say my doc recommended I see an orthopedist in the next few months to have the probably benign bony lump looked at. That afternoon, I called the UMass Medical center's orthopedics group and got an appointment for this Monday. Surprisingly quick, I thought.

Yesterday, I got in the mail a copy of the MRI write-up. Well, yeah, the bony lump is mentioned, but there's other stuff, too that is bumming me out. Like some issues with the posterior cruciate ligament and a condition called patellar chondromalacia, which is an inflammation behind the knee, with complete or near-complete cartilage loss.

I thought cartilage loss was only for football players and others who played sports for years on end. Apparently, what I've got can happen to older folks who overdo it. Well, also probably to older folks who have been quite fat for most of their lives.

Why did I join a gym? And, when I did, why did I sign up for a trainer who really pushed me? Guess I should have stuck to the treadmill and the stationary bike.

I've read that every pound lost reduces 4 pounds of pressure on your joints. I'm going back to Weight Watchers on Monday evening. There's a WW storefront about a mile from our condo. I'll go to live meetings to help with motivation and accountability.

I'll talk to the orthopedist about safe exercises for now. Guess it'll be upper body, stationary bike and some core strengthening only.

Whine over.

To Do Lists and Calendars

To do lists were a standard part of my day when I had a career. They were a good news/bad news kind of document. On the one hand, I would feel good when I got to cross things off and on the other, there were always a few tasks that I was putting off that would show up day after day, mocking me.

My calendar was virtual, part of Outlook, and 99% of it tracked the endless meetings that comprised the lion's share of my work day. Sometimes, I'd block out chunks of time in an attempt to get some items crossed off that to do list. Occasionally, there'd be a reminder for a personal thing like a dentist appointment. Other than that, mind-numbing meetings ad nauseum.

You know, I never thought deeply about what my day-to-day existence would be like when I retired, but I never thought I'd need a to do list or a regularly updated calendar. I suspect I fancied it would be more carefree and relaxed than the reality of retirement. I have a hardcopy calendar for the year and a pad entitled "Crap" that tracks my to do items. I'd be lost without these two things.

And, honestly, these tools help de-stress my life. If it's on the calendar, I don't have to remember it. Same for the to do list. I'm tracking doctor's appointments, meals out with my family and calls I need to make. Not client presentations and boring meetings. There's only one thing on my to do list right now that I'm procrastinating about. It's for my mother ... I really should get it done.

Fun Continues ...

Yesterday was a wonderful day, though I ended up overdoing eating and drinking, so was pretty much "done" for the day about 8pm.

While the aide was bathing and dressing Skip, I went down for a session of craps, with the agreement I'd be back up in about an hour to help with the wheelchair transfer. Well, it was one of those sessions when someone has an incredible roll and lots of money is won in a very short time. Yay! I was a little late getting back to the room since I had to stay until the hot roller was finished. No one minded too much when I got up to the room $1050 richer than when I'd left an hour earlier! That was fun, to say the least.

When Skip was ready, we headed downstairs and played a bit of slots and roulette for her. Shockingly, we won small amounts at each. Then we headed out for a short walk down the boardwalk. It was breezy, sunny and not too warm, so the walk was quite enjoyable. Great people watching on the boardwalk. Beyond the dunes, we could hear a live band playing reggae. I was inexplicably and ridiculously happy enjoying the wonderful moment.

We had hot dogs wrapped in pretzel dough along with a Ben and Jerry's milkshake for Skip and a smoothie for me. Skip was getting a bit hot, so we sauntered back to Caesar's (our hotel). Once inside, we played some more on a slot machine Skip really likes. Then, I took her up to the room to rest for a while before our 6pm dinner reservation. Second try for her renting The Guilt Trip with Barbra Streisand. Second time she fell asleep watching it. (To me, this suggests that the movie is as unentertaining as I thought.) I tried craps again while she rested. Not so successful this time, though.

We went off to dinner at The Atlantic Grill in Caesar's, which features a great view of the shore and ocean beyond. I had received an email from a casino host offering me some comps (complimentaries) at Caesar's for my birthday, so we chose a credit from him towards dinner at this restaurant. I had had a few drinks at the craps table and another at dinner. We both ate quite a bit, so by the end of dinner, the richness of the food had both of us feeling a bit uncomfortable. Instead of gambling for a while before the aide came to put Skip to bed at 9, we decided to buy some Tums and go up to the room and relax. I immediately feel asleep and woke up only long enough to help get Skip to bed then back under the covers I went. At 57, I guess I just can't go without enough sleep for a few nights then have a heavy meal and a few drinks. It just knocks me out.

Today is our last full day in AC. The weather is hotter than yesterday, so Skip doesn't want to spend much time outside.  She really wants a chance to shop!  Fortunately for her, there is a shopping mall attached to Caesar's called the Pier. It extends out over the ocean, so at least I'll get to look at the view while I wait impatiently for her to do her shopping. Not sure what we'll be doing for dinner, but I hope it's something a bit lighter tonight. Looks like coffee and water while I'm gambling ... no more black russians!

I'm sure we'll finish our last full day with the usual routine .... after Skip is in bed, I'll head downstairs to gamble at craps, blackjack and maybe poker, for quite a few hours. On our getaway day, we don't typically get in any gambling, because we'll want to get on the road in the early afternoon.

Just checked in with the intrepid MW, who is staying at our condo with the 3 pups. All are well. We always feel so comfortable that everything is good at home when she's there keeping our pups well cared for and safe.

They Say It's Your Birthday

I'm sitting here in our hotel room in Atlantic City. It's my birthday. A great day with my Skip is planned. Gonna gamble, eat and wander the boardwalk ... woo hoo!

We drove down to AC on Sunday afternoon. With some traffic and a short stop to gas up and such, it took about 6-1/2 hours door to door. We got underway at 1:15pm so it wasn't quite dark when we rolled into AC. Much easier and more pleasant driving in daylight over such a long distance.

When we checked into our room, we found that the bed sits on a base, presumably to keep it cleaner underneath, so the Hoyer lift wasn't going to work as designed. To transfer Skip from wheelchair to bed using the Hoyer, you put the long legs under the bed and this places Skip's body directly over the bed. Sunday night, I had to improvise and it was successful, but not easy and Skip admitted it was scary.

We had arranged with a local home health agency to send an aide for 2 hours each morning to bathe and dress Skip and help to get her up. She and I transferred Skip without using the Hoyer. Skip's wheelchair can rise up and down, tilt and recline, so it's easy to position it for a transfer. I didn't want to repeat the scary transfer from Sunday night, so I asked the aide if she could come last night (and the next 2) to help with the transfer and put Skip to bed. She agreed! Last night's bedtime was a breeze.

At home, ever since Skip had to start using a hospital bed with special mattress to help avoid pressure sores, we haven't slept in the same bed. Bah! Well, at least here, we can share a bed together for 4 nights. And, I must say this is a hugely comfortable bed. The last 2 nights I've slept through the night without waking, something I never do at home.

Well, I'm off to meet the aide at the elevator to bring her up to the room. Have a great day, everyone!

Yes, It Has Been a Long Time

Yep, over 8 months since my last post. I've been thinking about starting back up for a while, and am finally getting down to it today. I guess there are some things on my to do list that I really want to put off!

Some updates I'm sure you've all been waiting for with baited (or is that bated?) breath:

• We've now lived in Worcester for a year. We are really settled in here. We know the dog owners in the building and many of the other residents. The owners have taken over the condo association from the developer and I'm on the board. I'm only committed to the board for one year. It's been fun and interesting to help with the transition from the developer. 
• I joined a gym a block from here in January. Was going 3 or 4 times a week, working with a trainer, and really feeling good. Then, ping!, one day on the treadmill my knee felt a tweak. It never fully recovered, with the tweak recurring regularly. In fact, it got worse as time went on. I've got issues with every joint on my right leg now. Knee X-ray showed arthritis and an unidentified "bony lump." MRI coming up next. Oh, and the podiatrist after that for the pain in my arch on that leg. Can you say I was "overdoing it?"
• Skip was approved for personal care attendants (PCA's) through the state's Medicaid program, MassHealth. We have them for 29-1/2 hours per week. It's our responsibility to hire, train, fire and manage the PCA's and the state pays them based on the timesheets I fax in. We had pretty significant issues with 1 of the first aides we hired. She was unreliable and we were clearly at the bottom of her priority list. She's gone now (yay!). We had an aide that Skip loved to pieces quit because she got a job as a bookkeeper. Now we split the hours across 3 women who are all related -- a mother, daughter and stepdaughter -- which is working out beautifully. When one of them can't come for some reason, they find a replacement from one of the other aides and just let us know who's coming. This is such an advantage for me. Before when the unreliable aide would cancel, which occurred at least once a week, I was responsible for finding a replacement. Sometimes the other PCA was available and sometimes not. When not, I was the fill-in, which really pissed me off. 
• I am still cranky at times. In fact, for a while it was pretty ugly. I tried going to a therapist to deal with it, but I ended up not liking her style at all and after the third session, I stopped going to see her. Not sure what I'll do next. My spirits have been better of late, though I can still find my inner dark side. I think I'll reevaluate using outside help after I'm done with doctors and such concerning my right leg's many issues. 
• Skip is getting weaker, but her hands still function a bit. She needs help with eating most meals, especially dinner, when she's at her weakest. She's been a bit blue lately, but then wouldn't you be when almost nothing in your body works anymore? Really, she's a tiger, and has weathered the storms of MS far better than I think I would have in her shoes. 
• Skip has had no recurrences of pressure sores since her flap surgery to remove scar tissue in January 2011. Yay!
• We tried out a bit of traveling in April. First trip since early 2008. We drove down to Atlantic City for a bit of gambling, eating and shopping. We brought along the unreliable aide, so she could help with Skip's care and take her around shopping and help her play slot machines. Turned out to be a big mistake. Her younger son, almost 13, stayed with a sister back in Worcester and acted up pretty much from the moment we left. It got so bad, she was going to take a bus home one day early. She was miserable and distracted, casting a pall over the trip. So, we decided to leave a day early and drive her back. Did I say how happy I am that she's gone?
• We've decided to try another trip. Leaving for Atlantic City on Sunday. Four nights of fun await us there! We're not taking anyone else. It'll be just us chickens, with one exception. I've found a home health aide agency that will send us someone to bathe and dress Skip each day. I'll still take care of putting Skip to bed and I'll have to spend some time at the slot machines with her. But, we'll have some time just to ourselves, which will be great. Oh, and I'll get to escape into some degenerate gambling!
• We have a third dog. My sister's Shih Tzu, Dakini, has joined the household. My sister has had many changes in her life due to mold in her house and is dealing with chronic health issues triggered from the mold. She and her husband are now living in an apartment and in the process of building a new house. We love Dakini and are happy to have her here with us. All 3 of the dogs are sitting here with me on the couch right now.

Well, it's time to take the pups out for their noontime constitutional. Hope everyone is doing great! I'll send out some updates from Atlantic City.

"Just Us Chickens"

"Just us Chickens" .... that's what Skip and I call a day when no one is coming to the house. No aids, no nurses, no other people invading our space. Honestly, the people who do come are helping both of us immensely. Everything they do for me or Skip is something I don't have to do. And, Skip gets a change of company, someone to visit and chat with other than me while having her wants and needs met.

I wouldn't want to go more than one day in a row without assistance, but for that one, it's a real pleasure. Nine out of 10 Mondays are "just us chickens" days. Almost always, it's a peaceful and loving day, where we're both in excellent moods and spend our time together quite companionably. For some reason, even with the extra work, I rarely get angry on Mondays.

Skip is in the process of gaining approval for a state-funded Personal Care Attendant (PCA) program. This will give her a certain number of hours each week to allocate to her care and we get to hire and schedule the folks who do the work. We're still planning on leaving Mondays just as they are -- with just the two of us together at home.

Pics of the Place

Found my camera and took some pics of our condo the other day. I've omitted the 2 bedrooms. One is still filled with junk in boxes that I am slowly but surely selling off. The other had unmade beds in it.

This is a view of our front door. Our chalkboard is a wonderful device. I add appts there,  have a spot to record random items we need to buy so I don't forget them when making a list, and our punch list of things to do around the house. For Thanksgiving, it was a big help tracking menu items and task lists.

When you come down the hall from the front door, this is the view to the left or our LR/DR/kitchen. You can see our 2 dachshunds relaxing along with my sister's Shih Tzu Dakini who is visiting us. She probably spends about half her time with us and half with my sister. She's much better behaved than our dogs, because my sister actually trained her, though she is prone to bouts of anxiety, especially when there's heavy weather outside.

Take a right past the chalkboard and you enter the large hallway leading to our bedroom. To the left is a little alcove that we've set up with bookshelves on one side and an immense Ikea wardrobe on the other.

The aforementioned wardrobe. This is where we store Skip's chair when she's in bed.

Turning back down the hallway, you can see our main room.

The view of the main room standing at the other end. 

Fun, But a Lot of Work

The title, in a nutshell, describes Thanksgiving day (and the day after, when the cleanup was completed).

I was happy to provide a place for my whole family to celebrate the holiday together. We had 3 generations present and only one person from the youngest generation was missing (one of the older twins of my sister - who has 2 sets of twins - is enjoying a semester at sea, so couldn't join us). Everything I cooked was pretty straightforward to prepare, so the challenges of the day were primarily about timing - which task to do when.

It certainly is different having a party here in our condo than in our old house. For one thing, we were all in the same room rather than split up with some in the kitchen, some in the living room. Here, it's all one big room, so I was never by myself in the kitchen prepping or cleaning up. Also, we lived in our house for 23 years, so I knew where everything was, had routines established for parties and had lots of storage so we had tons of serving dishes and such. I gave away or sold a lot of things when we moved, so I wasn't quite sure what serving pieces we had. Fortunately, the huge platter, big enough for a 24 lb turkey, was still around. And, I found enough pieces we'd kept to put out hors d'oeuvres and serve the myriad of dishes I prepared. And now, we've made it through the first big shindig so it'll be that much easier the next time.

Thanksgiving

We're hosting Thanksgiving at our condo. By this, I mean, we'll be joined by my immediate family that day. There'll be 14 of us. It will be a good chance to show off our new home, especially to my mom, who hasn't seen it yet. I do actually enjoy hosting parties, and we haven't had a party in our home for years. I plan to enjoy myself a lot. It's always energizing to host a party.

I had a vision of a party that would include an easy clean-up. You know, paper plates and plastic silverware. Only because, honestly, our regular dishes have place settings for 12 and our flatware the same, so there wouldn't be enough for 14 folks.

Well, when I was driving my mother down to Connecticut on Friday to see her 92-year old sister, she took the long drive as an opportunity to quiz me concerning dishes, flatware, tablecloths, tables, napkins, etc. that we'd use for the meal. Too funny! When I made noises about paper plates and plastic silverware, it was quite clear that wouldn't do! She reminded me that she'd given me a set of sterling silver flatware when she moved out of her house, so we could combine them with our stainless. And, I have other one-off dinner plates packed away somewhere that we can use.

So, now I realize we've signed on for a fancy shindig. And suddenly it occurred to me that I don't know where many of the rarely used serving pieces and such are. Where did they get put away in the new kitchen? Did I actually give away all our platters before we moved or do I still have one somewhere to hold that 24 pound turkey I'm cooking? And, shades of my youth when my mother had me polish silver before any big party, tomorrow MW and I will be doing a bit of polishing ourselves, assuming I can find the serving pieces. 

Regardless of what pieces we mix and match to make up the place settings, I know we'll all have a lot of fun on Thursday. I'm really looking forward to it, and especially to showing off our new place. 

Caregiver Aids #17: Combination Door Lock

So you're a caregiver. So you have people coming to your home to help your loved one. Sometimes you're not there when they arrive and your loved one can't answer the door. Do you leave your door unlocked for all to enter, whether wanted or not? Do you hide a key somewhere, like under the doormat?

This handy little deadbolt with a combination lock can be the answer to all your troubles.

You can assign up to 19 4-digit codes to unlock the door. This way, each person that comes to the house can have his/her own code. When that person is no longer a part of the "caregiving team" you can delete the code. 

In our case, during those rare times when we're both out of the house, we can lock the doorknob and that will stop access by those who have a combination to open the deadbolt. 

There are lots of other relatively inexpensive home access options, including locks that can be wirelessly controlled. I didn't entertain using those for Skip because she has so much trouble with her hands, operating a remote entry system wouldn't have worked for her. This gives us what we need without Skip's hands having to be part of the solution.

Hunkered Down in The Woo

Yep, we're hunkered down in Worcester, affectionately known as "The Woo" to many. We've been buffeted with much rain and wind today as we sit on the outer edge of Hurricane Sandy's reach. Fortunately, we haven't lost power nor seen much impact from Sandy. 

Many of you will recall that last year, just about this time, we had an October Nor'easter that dropped a lot of snow in these parts. We lost power for more than 3 days and ended up spending 2 nights in a hotel and 2 nights at my mother's home on Cape Cod. 

Although widespread power outages were expected, I was cautiously optimistic we'd avoid last year's fate. First off, no snow was forecast here. It was the heavy, wet snow on trees still full of leaves that brought down so many power lines last year. Second, the utility companies must have figured out it cost more to go around repairing lines after storms like last year's than policing the limbs and trees overhanging their wires, so much pruning has occurred since last year, reducing the likelihood of power outages from limbs and trees falling on lines. Lastly, we live on a street with no power lines or telephone poles, so no falling trees would impact this neighborhood, power-wise.

"Expect the unexpected and unexpected never happens," said Norton Juster in The Phantom Tollbooth. Following his maxim, I spent most of yesterday preparing for a possible outage, even one severe enough to force us out of the house and into a hotel. Retrieved Skip's manual wheelchair from storage and cleaned it off. Charged up the power chair, the hoyer lift we'd need if we decamped and every other chargeable thing in the place. Gassed up the car, got cash, etc. etc. 

At first, I was mostly preparing for us to leave with an outage, as we had last year. But as time wore on, I realized we'd probably be able to stay at home if we lost power. The key difference between this year and last is: cold. Our house got down to about 60 degrees within hours of the outage, and then kept dropping, far too cold to comfortably stay there. Here, it's been in the 50s all day and now the temp is climbing with tomorrow projected to hit 70. I only heard the heat come on a time or two today it's been so mild. 

Happily, all the preparations were unnecessary as we've not lost power and the worst of the storm has passed. It rained all day. We experienced winds gusting up to 55mph. Now the winds are about 20mph with gusts up to the high 30s. We could still lose power ... MW just sent a text about 20 minutes ago saying that they'd just lost theirs ... but it becomes less likely with each passing minute. 

I'd say the biggest effect of the day has been caused by the low pressure. Apparently, the pressure is phenomenally low and it set some kind of record. The low pressure has given me a hellacious headache and caused all sorts of problems with my inner ears. I've been feeling a bit of vertigo and queasiness, so I took Zovran and Meclizine, my one-two punch of drugs to minimize the effects of my Meniere's disease. (Speaking of which, 2 weeks ago, I had a whopper Meniere's attack and had Skip call 911 to have an ambulance take me to the ER. I couldn't stand a 10-hour attack of vertigo and vomiting with the ground heaving like I was on a ship in a choppy sea. The EMT gave me Zovran and, voila, the nausea stopped! I'd never had Zovran before, but you better believe I got a prescription for it the day after my ER visit.)

So, the stress of pre-storm worry and today's waiting out the storm has taken its toll and I'm feeling pooped. Skip's already in bed. I just have to finish the dishes and take the dogs out then I, too, shall head to bed. When I wake up tomorrow, I hope for continued electricity and a return to normal air pressure. 

Hope you are all safe and snuggled in your homes tonight!