No Respite for the Weary

Took my business trip. Everything at home went just fine, as I had anticipated. I know Skip was nervous before and during the trip, but everything worked out perfectly.

But the hoped-for respite didn't bear any fruit. I came home and felt the same burdens fall back on my shoulders within just a few minutes of my arrival and, most importantly, I didn't feel the 2-day absence from the house put me in any better position to bear them. It always sucks when hopes are dashed on the rocks of reality.

Heading Out of Town

I'll be taking a short, two-night business trip this week. Heading out on Tuesday afternoon and returning on Thursday evening. Despite the fact that the full-time care for Skip in my absence is expensive, I am looking forward to the trip quite a bit, primarily for the caregiving break it will provide.

From a work perspective, it's a low-stress trip. It's two days of internal meetings, so no client stress. I will spend the time with people whom I like (mostly) and it will be good to see some colleagues in person that I normally only interact with on the phone, in email and via instant messaging. I had some prep to do for one small part of the meetings, but the rest of the prep was done by others (yay!). The biggest stress, work-wise, is ensuring I have decent clothes to wear and comfortable shoes. Since I've been gaining weight of late, a lot of my decent clothing is a bit snug now and I've purchased some new, larger blouses and dress slacks in anticipation of this trip. And, I spend most of my time now in bare feet or slippers, so wearing shoes for 3 days straight will be a challenge.

For some reason, the fact that Skip is virtually 24/7 in bed makes me more comfortable with having others provide care in my absence. I think this is because there will be no transfers that could be an issue. MW, Skip's aide, will be here about 2/3rds of the time I"m away, from mid-afternoon through the night into the early morning. From 7-3 each day, we'll have a home health aide in to take care of some of the "heavy lifting" of caregiving.

This is the first time I'll be taking advantage of a new program offered by my employer. If you need emergency dependent or elder care or have a work obligation that requires additional coverage in your absence, you can get this coverage up to 20 times a year at a fraction of its actual cost by going through this work-sponsored program. Where we'd normally pay $27 per hour for an agency home health aide, using this service I only pay $8 per hour, my employer picks up the difference. This is a national program that works with local day care centers and home care agencies to provide the care.

When I first called to find out how to make arrangements and register for the program, I asked if the agency we normally used for coverage in a pinch was on their list and found out they were not. We were disappointed, as it meant there wouldn't be a chance for having the aide, MJ, that has been coming for 5 years. Skip wouldn't have the comfort of a familiar face and would have to train the new aide on everything. Imagine my surprise when I got a call on Thursday telling me the aide had been scheduled, and it was MJ! I'm quite delighted that Skip will have a familiar face, someone she likes and is very competent, come and help each day. The only thing I'm worried about now is how she'll keep MJ occupied for 8 hours each day as she is a whirlwind and a ball of fire who always likes to keep busy.

This leaves, really, only one concern for me. That is, the wound vac dressing. The wound vac works with a sponge inserted into the wound that is covered by a Tegaderm drape. Tegaderm is like the adhesive part of a bandaid, only much lighter. The dressing is changed every 2-3 days. It's being changed today, then again on Tuesday, the day I leave. On the days between dressing changes, leaks often occur that require minor patch jobs by me. I remove the small bits of dressing that have become damp and need to be changed then apply a strip of Tegaderm to restore the seal. If I'm not here, there won't be anyone to do the patch jobs. As a result, I expect a wound nurse will be needed both days I'm away, once to make leak repairs and once to replace the dressing completely. I've already discussed this with Skip's wound nurse so she's aware an extra visit will probably be needed.

So, it looks like my trip will be a good break for me. No stressful work stuff and few worries about the situation back home, knowing that Skip will be well taken care of around the clock. I look forward to spending time alone in my hotel room, relaxing and having no caregiving tasks awaiting my attention.

Back to the Wound Clinic

Last Thursday, the day that Sally died, we canceled our wound clinic appointment. Neither one of us was really up to it. Since Skip's wound has been progressing beautifully, it also seemed to be a very low-risk move.

So, yesterday found us back at the clinic for Skip's rescheduled appointment. Skip's aide, MW, came over about an hour before we left to give me a hand in the final prep to get Skip up and out. (I'm not exactly sure why, but getting Skip out of bed nowadays seems like a much bigger effort than before she was hospitalized. I think it's because it's no longer part of our regular routine and more of a special occasion.) The sling is working very well for the transfer and causes no pain for Skip at all.

At the clinic, once we got Skip settled in on the stretcher, the wound nurse removed all the old dressing and took measurements. While the wound hadn't shrunk as dramatically as in prior visits, the key measurement of length of the tunnel was smaller, so that was good news. The plastic surgeon came in and gave us a warm greeting, he is a very warm and friendly person. Last week, he called to give his condolences about Sally's death and he again brought up it to say how sorry he was. When he looked at Skip's wound, he declared it "superb," so everyone remains quite pleased with the healing progress.

In two weeks, when we return to the clinic, we'll meet with the infectious disease doc who consulted on Skip's osteomyelitis when she was hospitalized. He can determine when to have an MRI to confirm the state of the infection (that is, confirming its eradication!) and check the state of Skip's tissue on the left side of her butt (the MRI that disclosed the bone infection also showed damage to her left buttock tissue, a precursor to a wound on that side that has never developed).

Unlike our last trip to the clinic, the weather yesterday was mild for February, above freezing and in the 40s F, so no issue with iciness. Skip felt good being out and about. During our unusually long wait before being seen, Skip remarked how much better she felt being up and out in the world. Perhaps our next outing can be a visit to her hairdresser to get her haircut, which is about 6 weeks overdue. While we were sitting there, I joked that I should get a Flowbee to give her a haircut. On my blackberry, I googled Flowbee, and there it was, on its own website, still in existence, even though I haven't seen it advertised on tv in years. Maybe she should just get a buzzcut now while she's spending most of her time in bed. That might be fun!

When Cranky Met Sally

This photo was taken just a few days after we got Sally in December 2005.

What a tiny little peanut she was!

First, some background. We got our first dachshund, Sadie, soon after we moved into our home almost 21 years ago. When Sadie was 15, we figured she didn't have too much longer with us, so we started looking around for another dachshund to adopt. Skip had been looking around at the websites of different breeders and had come to love the piebald coloring. She found a 1 yr old piebald female that a breeder in Texas was selling. Skip worked out the purchase, and Ruby was shipped up to us via Continental Airlines, which has a good animal transport program. I picked Ruby up at Boston's Logan airport in February 2005.

Sadie and Ruby got along well. Ruby is very mild-mannered and so was Sadie, so there wasn't any jockeying for primacy. Sadie lived until May, dying shortly after she turned 16. We had loved being a two-dog household so began the hunt for another dog. Skip found Sally on the website of the Texas breeder and we arranged to have her come up again via Continental. She was 4 months old when she came to our home.

Sally was scheduled to arrive in the late afternoon. I headed over to the Continental baggage pick up to meet her. When they confirmed who I was, they brought out a tiny pet carrier. I was shocked at how small it was, it was more appropriate for a tiny cat than a dog. I looked inside and there she was! A tiny, shivering puppy.

I took the crate to the car, and placed it on the seat beside me. I cranked up the heat. When we got Ruby, the breeder had cautioned that we not take our new dog out of her crate until we got home. This would avoid any opportunity for the dog, who could be frightened, to run off and get lost. But in this case, I didn't take that advice. Here was a 4-month old puppy, who'd just flown up from a warm climate to a freezing cold place on a 3-hour plane ride. I couldn't leave her cold and scared in the crate all the way home. I opened the crate and took her into my arms. She clung to me. She was beautiful, tiny and sweet. I unzipped my jacket and held her close to me, so she could get some warmth. I could not put her back into that crate for the drive home. I knew it wasn't the safest thing I'd ever done to drive the hour home from the airport holding a tiny puppy, but I did anyway. When we got home, she didn't want to be far from me, and stayed in my arms most of the evening.

With that rescue of Sally from the crate, from holding her close to me for the drive home, from keeping her with me through the first evening, a strong bond was formed. Sally wormed her way into my heart right from the first moments of her life with us. I liked to joke that she "owned" me as I was completely helpless to resist her. And, the feelings went both ways. I was definitely her number one, and when she was nervous, she wanted most to be with me and get comfort from me.

Dogs bring so much joy to our lives. We were lucky to have Sally for even a short time.

What Do You Say When the Unthinkable Occurs?

This morning, our wonderful and beloved Sally died. Just two weeks ago, I took her to the vet as she was out of sorts. Blood tests came back normal and we thought it was probably a back or neck strain from all of her jumping around, especially as dachshunds are prone to back problems. As the days progressed, her symptoms were minimal in the mornings, when she pranced around like her old self, but would come on more as the day progressed. The afternoons would find her sacked out on my bed, sleeping, with some tenderness and discomfort if you tried to move her.

Monday afternoon, when out in the yard to pee, she seemed to be experiencing a higher level of pain than I'd seen before. On her way back to the house, she stopped walking a few times as if it was quite painful for her to continue. Tuesday morning, she was extremely sensitive to any kind of motion, either her own or mine. That afternoon, I took her over to the Tufts animal hospital, which is a high-powered veterinary teaching hospital about an hour from here. We went there when our now-deceased dachshund Sadie needed back surgery. I thought we were in for back surgery in Sally's instance as well. The vets that examined her thought that likely too, as her symptoms were consistent with a herniated disc in her neck. They said she'd get a CT scan on Wednesday morning to confirm the diagnosis.

Sally needed anesthesia for the scan. About half an hour after the anesthesia was administered, she stopped breathing on her own. They breathed manually for her for about an hour, but she never took over breathing for herself. They put her on a respirator and set her up with fluids to help flush out the dye used for the scan, in case her problem was due to an allergic reaction. They also began treatment for her real malady, meningitis, that was identified as a result of the scan. But, as the day progressed, her status remained unchanged and the prognosis grew more dire. By early evening, we decided there was not really any hope for a recovery but had the hospital keep her on the respirator through the night. That way, I could go to the hospital in the morning and, assuming no miracle occurred, would be able to say goodbye and be with her when she died.

Two dear friends drove me over early this morning while a third stayed with Skip. When we arrived, the vet neurologist told us that Sally's situation had further deteriorated overnight as she was no longer able to control her electrolytes or blood sugar. Clearly, the condition was unrecoverable. We went in to the ICU to see our little Sally girl, stroke her, give her a kiss and cry while we said our goodbyes. They gave her the injections to euthanize her and, poof, in a moment, she was gone for good.

Goodbye, Sally, we will miss you more than you could possibly imagine!

You'd Be Depressed, Too

There's been this nagging thought in the back of my mind for a while that I'm depressed. I've finally let that thought out, to the forefront of my mind, to get some analysis in the light of day. Yes, I am. I find little pleasure in things that I used to enjoy, my appetite has changed (increased, unfortunately, so I'm depressed about putting on weight), sleeping habits have changed so I wake up much earlier than I need to so I can lie in bed and stare at the ceiling, and, worst of all from my perspective, my ability to focus and concentrate has really taken a hit. So much so that it affects my ability to accomplish thoughtful work for work.

And, who wouldn't be depressed with all that's gone here in the Cranky and Skip household over the last 2 months, and even before? Skip's huge bedsore, the bone infection resulting from it, 5-1/2 weeks in the hospital, a whole new "paradigm of caregiving," (if I may be so bold to call it that, since the routines in our day have changed dramatically with Skip bedbound), and separation in the form of hospitalization then separate beds and Skip confined to the bedroom all day long (not a comfortable spot to hang out in for me). And then there's the concerns about the future. What will Skip be capable of physically when she is no longer required to spend almost all her time in bed? Will this bed confinement cause a permanent dimunition in physical ability that makes it even harder for us to get out and about, both for quick trips out for dinner/shopping and longer travel for vacations?

Well, to be quite honest, the Cranky of 10 or even 5 years ago wouldn't have been depressed about this. She would have looked at this as one more challenge in the long continuum of life lived with MS. She would have done all the things I'm doing today, like take care of Skip day in and day out, work her job, do all the tasks required to maintain the household. But without the overarching depression I feel every day.

The Cranky then had something I don't have too much of anymore: resilience. The ability to roll with the punches, to bounce back from setbacks. I think the unending demands of caregiving, the continuous grieving with each new physical loss to the inexorable progression of MS, the growing isolation have all eaten away at the resilience I counted on to help me deal with our life.

Hmmmm, I wonder if there's a way to rebuild resilience?