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.