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?

Sally Out of Sorts

For the last few days, Sally has been acting out of sorts. Tuesday night, she didn't eat dinner. By Wednesday, she was shivering almost all the time (normally in the winter, she shivers frequently but not incessantly). She ate breakfast but, again, no dinner. MW and I both noticed that she was very clingy if you picked her up, atypical behavior, as she usually gets a bit squirmy after one kiss. Sometimes she'd stare blankly into space. I then began to think I hadn't heard her take even a sip of water in quite a while; though she was still peeing when we went out. Every once in a while, she'd let out a whimper when putting her down, like something on her body was tender. She seemed less active and bratty than usual.

So I took her to the vet today. At 4-1/2 years of age, it was the first time to the vet due to illness, so she's a pretty healthy pup overall. She hadn't lost any weight. The vet couldn't find any joint sensitivity. Her temp was normal. She wasn't dehydrated. Of course, when I put her on the vet's table, she stopped shivering. So, the vet drew some blood to test her for Lyme disease and all manner of other vile options, such as liver and kidney ailments. She sent me home with a deworming pill, which I gave to Sally earlier this afternoon. Tomorrow, we hear blood test results.

Heartened to know she's not dehydrated, which was my biggest concern, I have been able to look at the situation with a little less alarm. I am looking at the blood tests primarily as a means to assure ourselves that nothing serious is going on. I now suspect she strained something jumping and her shivering, clinginess and blank staring are due to that. If this is the case, then she'll probably be this way for a bit while she heals then slowly return to the happy go lucky, trouble-making Sally we all love.

Right now, Sally is snugged up against me on the couch, with Ruby on the other side of her. I've got her covered with a throw. She's asleep and the shivering is currently at bay. Skip wants me to get up and serve dinner, but I hate to leave Sally, because I know she'll follow me into the kitchen, plop on the dog bed out there and instantly begin to shiver again. I love the love and loyalty of dogs, following their humans around, but sometimes I wish she'd just stay in one spot and heal!

Surprisingly Successful Trip

As my post yesterday indicated, I thought the trip to the wound care center on Thursday would be very tiring for Skip and a difficult one for both of us. Actually, this turned out not to be the case. The dry run of transferring from bed to chair and back again on Wednesday gave us some very important information that contributed to Thursday's success, because I knew the lift system alone would be insufficient for transfers.

With MW's assistance, the transfer out of bed went very well. I placed a completely open flat sheet on the wheelchair to help wrap Skip in during the trip over and, even more importantly, to use as a sling for transferring onto the stretcher at the clinic. Then, we positioned the body support under Skip. As we began the lift, we used the draw sheet on the bed (which was under her butt) for some additional lift, to take pressure off her shoulders. Doing that, we got her into the wheelchair with minimal pain.

While I packed up the wound vac supplies, MW got Skip totally wrapped for the trip. I gave her hair a good brushing (I mean, the poor woman has an incredible case of bed head!) and we were out the door.

It was snowing on the drive over, but only lightly, so it proved no impediment, and we arrived at the wound clinic a bit ahead of schedule. It was such a pleasure to have Skip in the car beside me. That hadn't happened in about 2 months! She was in good spirits and glad to be out in the world again.

When the wound nurse and plastic surgeon examined the wound, both were extremely pleased with the progress. The surgeon used words like "fantastic" and "excellent." He also confirmed that Skip wouldn't need a follow-up MRI to confirm her osteomyelitis (bone infection) had been wiped out for another 4-6 weeks. I'm glad that we don't have to figure out how to get Skip onto the MRI for the test yet. Better she have some time to get stronger before we face that.

Heading back, we were both in good moods. Skip didn't seem wiped out or weak at all, even though the examining room had been very warm, which typically makes her very weak. The drive back was a bit scary though, as we were unaware that the roads had turned to black ice in many spots until the car in front of us swerved into the other lane to avoid crashing into the car ahead of it. My brakes really pumped themselves to avoid a skid and we were able to avoid hitting any other cars. As we went along, it became quite clear that the roads were slick in many, many spots and the sanding trucks hadn't yet made it out to cover the ice.

Arriving home without further incident, we put Skip back to bed right away. She felt good enough to sit up longer, but we didn't want her on the wheelchair cushion for too extended a period. MW had prepped the bed, changing the sheets, putting out a fresh johnny and such. We used the sheet under Skip to help offload some of the weight on her shoulders and again transferred without issue. (It looks like, for now, we'll need to perform transfers with one other person to assist.)

All in all, a very successful trip. Skip wasn't stressed out by being out, she never got so weak she couldn't drive her chair herself and the wound healing progress got a definite thumbs up. Oh, and we avoided crashing the Toaster (aka Honda Element). Maybe she'll soon be ready for a trip out to our favorite Vietnamese restaurant!

Skip Out of Bed

Until yesterday, Skip hadn't gotten out of bed since she got home. At the rehab hospital, she was supposed to get up for an hour a day, but that frequently didn't come to pass due to a variety of scheduling conflicts. We, too, were supposed to get her out of bed every day for an hour, but didn't attempt that until yesterday.

We have avoided it for two reasons. First, the positioning of the dressing/drape for the wound vac means it can be affected by the bending at the hip that occurs when she's positioned in the lift. During the first go round with the wound vac, a lift caused the drape to come unattached and the sponge in the wound to fall out. We were concerned about too many lifts having a similar impact. Second, her power chair still has the original foam-only seat cushion, which we believe is the primary culprit for the wound she has. A Roho cushion is on order but has not yet arrived. Her physical therapist counselled against much time in the chair before the Roho is here.

But, Skip has an appointment at the Wound Care Center today, so we needed a dry run in the chair to make sure she'd be able to make the trip. In the initial transfer from bed to chair, she complained of pain from the lift in her back. It wasn't severe enough to stop the transfer, so we successfully got her settled in without much ado. The intrepid MW was here at the time, so she provided good spotting support and held all the tubes (catheter, wound vac) during the transfer.

It was so exciting to see Skip in the living room! The pups were delighted, too. We got her settled into her regular spot, and they jumped up into their bed that is positioned beside her. They didn't move the entire time she was there. We did the transfer shortly after my work day ended, so Skip was able to stay up and have dinner in her chair. Soon after dinner, though, she started to feel weak and slumped a bit. So, we got her into the bedroom and I positioned the lift under her armpits and thighs to get her back into bed. That's when the trouble began.

As I started to lift her from the chair, she made me stop because her shoulders hurt so much. I tried repositioning the lift and started it again. Again, I had to stop. I am not sure what the root cause of the problem is, but I am concerned that she might have lost needed muscle strength in her shoulders and upper trunk that's needed for use with the lift.

I ended up calling the Fire Department and they sent over two able fellows who, using a sheet we slipped under her by lifting her only slightly, were able to complete the lift-enabled transfer without pain.

For today, MW will be here when I'm transferring Skip before going to the wound appointment. I expect we'll use the draw sheet on the bed as an additional support during the transfer. Then, it'll be under Skip on the wheelchair, so we can use it to assist in transfers at the doctor's and then when she returns home.

I think today will be very hard on Skip and expect she'll be quite weak. Fortunately, I can operate the joystick on her wheelchair if she is too fatigued to manage it. So, while it will be a trying trip for her (I suspect), we can get through it without her needing to do much on her own.

We learned some important things in that transfer yesterday. Skip needs to work more aggressively on exercising her upper body, and we can work with her physical therapist on that front. And, the body support for the lift system may be too much for her right now and we'll need to use a sling for a while. We do have one, that I purchased to use with the portable patient lifter during vacation. But, I'm not sure if it will work on the SureHands, so I'll have to investigate that over the weekend, when I have more time and patience.

Wish us luck today at the wound care center!

Work and Caregiving, Together Again

Today was my first day back at work since Skip's return home. As noted a few posts ago, I had some concerns about my ability to balance the two and give a good effort at work.

A few good things have occurred over the last week to help alleviate some of those concerns. We started getting help with meals provided by members of our local UU congregation (so far two meals have been provided, with enough the second time to freeze for another meal). And, best of all, the home health aide started coming. This was a revelation, she is so wonderful! Since my last post, KH has come 4 times and is scheduled for 4 visits a week. She has relieved me from so much work, she does a wonderful job and she's chatty and cheerful. All my expectations have been more than exceeded. She bathes Skip, does her hair, helps her with her teeth, applies cream head to toe, changes the sheets, puts on a new draw sheet and chux, and leaves the place cleaner than when she arrived, all with a great attitude, laughing and making conversation throughout. On the days KH doesn't come, I do an abbreviated version of Skip's cleanup. As you can imagine, this has been a huge help for me, lightening my load and my spirits immensely.

Before today, I tried to get us both mentally prepared to do the work/caregiving balance dance again. The balance actually was achieved today. We were able to get a number of things done for Skip even before the work day officially started. Then, lunch, snacks and the abbreviated bath were all handled during brief breaks in the day. She was otherwise low maintenance, though she wasn't as cheerful as usual.

I was scheduled for 7-1/2 hours of meetings between 9 and 5 today, but two calls in the afternoon were canceled (hoorah!). This worked out well because Skip's wound nurse came just before 2 to change the wound vac dressing. I was able to be around during much of her visit because of the unexpected opening in my schedule.

I will say it was good to be back with a busy day that holds more than I can possibly do. In many ways, that's how I like my days. They fly by, I'm never bored, and I like figuring out how to get everything shoehorned into the day. Work also gives me the opportunity to feel a sense of accomplishment as I cross things off the to do list and to put my writing and speaking skills to good use.

All in all, it was a good first day back at work. Nothing too challenging emerged on either the work or home front, so that was a blessing. I'm hopeful we'll have a few more days adjusting to our new routines before something blows up and sends everything skittering sideways and throwing the work/caregiving balance out of whack.

But, it's been a long day and I am pooped. I think I'll turn in now!

Help From an Unexpected Source

A day or two before Skip came home, I got a call from the minister at the church where we are members. It's the local Unitarian Universalist congregation (for those of you not familiar with UUs, it's on the far left end of the Protestant religion continuum). I went to this church as a kid, when my parents lived here in town. Skip and I started going there about a dozen years ago, but over the last 4 or 5 years have pretty much stopped participating. (It's funny, before we started going, my mother kept telling us to join, as there were lots of lesbian couples there. Turns out, she was right!)

While Skip was in the hospital, she'd asked that it be kept somewhat quiet so as to minimize the number of visitors she received. She prefers only visits from a few close friends and family members. As a result, word didn't get out to members of the congregation until near the end of Skip's stay.

Anyway, the minister, KL, called to give her condolences and offer support. In particular, she told me that some members of the congregation can actively provide support to families like ours at times like this. They can run errands, visit and provide meals. I welcomed the offer of help, especially if someone could provide a dinner here or there. I checked in with Skip, who agreed that would be most welcome, and I let KL know when she called back yesterday that we'd welcome the help.

This morning, I got our first call from a member of the congregation, checking in to see if there was anything we needed today, like an errand run or a meal. With MW cooking tonight, no need for a meal, so we're okay today. But, come Friday, when MW isn't working, I am hoping we'll be able to have someone stop by with a casserole. Frankly, I can't wait!

Caregiving is Challenging

I'm mentally and physically out of practice in the caregiving role. And, Skip's needs are more significant now, while she's bedbound, then they were before going to the hospital. I'm struggling with meeting Skip's needs and also meeting some of mine.

While Skip was in the hospital, when I visited I watched a parade of aides and nurses coming and going, tending to her. Now, virtually all of that is being taken care of by me. The wound nurse has come a number of times to change the wound vac dressing, MW has been here for about 14 hours total since Skip got home. Other than that, it's all been me. Bathing, medications, food prep and cleanup, laundry and much, much more.

I start most days in pretty good spirits. This usually can get me through morning pills, breakfast and a bed bath. As the day wears on, though, the spirits dampen with the continuous caregiving responsibilities. I've hit the cranky wall at least once a day.

Right now, my life consists primarily of caregiving tasks, escaping into games on Facebook and sleeping.

Tomorrow, we'll have the first visit from a home health aide. She will handle the bathing, linen changing and such. This will help alleviate some of the burden I'm feeling. She should be coming 4 times a week.

My key objective through this week is to burn-in the care routines, getting them accomplished faster and more predictably so I'll be able to balance them equitably with work responsibilities that start up on Monday. That is a big objective and I'm not certain it'll be achieved. I think the sum total of caregiving demands will have to be reduced for me to give a reasonable amount of focus to my job. A job that will be more demanding than normal when I get back at it because I've been out this week. In short, I'm pretty concerned.

One More Day

Skip's discharge is still a "go" for tomorrow. Looks like everything has come together well.

I bought a new twin platform bed for myself. It was delivered yesterday. Bought sheets and comforter for it as well.

The hospital bed for Skip is being delivered at noon today. They'll set it up in the bedroom then.

My brother and his son are coming mid-morning to help me move furniture around. They'll take apart our platform bed and haul it out to the garage (I plan to get rid of it and buy something better for offloading pressure as our next bed). We'll turn the bedroom carpet, vacuum places that haven't seen the light of day in 20 years and get the room ready for the two new beds. (Actually, the two dressers, desk and headboard haven't moved in more than 45 years, when my parents moved in. They left the bedroom set for us when they retired to Cape Cod. It's a great set. It's from a kit my Dad bought at Sears and assembled himself somewhere between 50 and 60 years ago. Much sentimental value.) They'll assemble the new twin platform bed for me. They'll also move some other furniture around to make more space in the bedroom. It's great to have tall, strong, strapping family members who are so willing to help out!

The wound vac for home use was delivered to Skip's hospital room yesterday. They'll get that attached when they change her dressing tomorrow.

Starting tonight, I'll be on a brief leave from work (the remainder of this week and all of next week).

The intrepid MW (Skip's aide) is lined up for today and tomorrow. Today, she can help with some of the final bedroom set up and such. Tomorrow, she'll be around for anything that comes up; I'm sure an extra pair of hands will be most welcome in Skip's first hours home. Also, I'm having groceries delivered (first time since Skip went into the hospital) to replenish the very depleted larder while MW is here so she can handle that, no matter what the schedule is with the hospital around discharge, final meeting, etc.

And that reminds me, really the only thing left to find out is timing of the meeting with her doc before the discharge and when the ambulance will be picking her up to bring her home.

It's Beginning to Feel Real

Skip's discharge and arrival home, that is. It really is beginning to feel real and I can't wait for it to happen. It's only eight days from now, and I do believe she'll be coming home that day.

I had a long talk with Skip's case manager at the rehab hospital on Monday to talk about lots of transition things such as the special bed, the wound vac rental, any barriers to a possible discharge, visiting nurse, home health aide and PT/OT services at home and so on. We both walked away with various follow-up tasks, and based on the phone calls I've been getting, she's taking care of her end of the bargain.

I got a call yesterday from the company that manufactures and rents the Clinitron bed. Apparently, Medicare doesn't pay for these for home use unless the patient has used a different kind of bed for 30 days and can demonstrate inadequate progress using the other bed. So, they'll deliver a low air loss mattress and hospital bed frame, likely the day before Skip comes home, for her immediate use. Then, they'll keep in touch with the visiting nurse agency to get data that might support the upgrade to the Clinitron. Just that call really made it feel real to me. If we're talking bed options and delivery dates ... it's really gonna happen.

Skip is staying at the rehab hospital until the 14th in order to complete her course of IV antibiotics before returning home. I figured the only thing that would hold up the release was a determination that a longer period of IV administration was required. I hadn't heard anything about a follow-up visit with the infectious disease MD who worked with Skip in the hospital, so I gave his office a call on Monday. Turns out it's not too easy to determine if the infection is gone from the bone. His recommendation was to have the plastic surgeon evaluate the situation on Skip's next visit (tomorrow) and, from that, suggest likely next steps. I suspect what will happen is that Skip will come home with a prescription for oral antibiotics to keep the treatment going and then other diagnostic work will follow to evaluate the situation. I'd imagine this would include tests like another MRI to take a look at the hip bone.

We've already got a relationship with a local agency that has visiting nurses, home health aides and physical therapists. The hospital will write the orders for the care Skip needs and they can be the providers, which is good since we already know a bunch of the nurses. I think we're going to have a conversation about MRSA, though, before anyone gets their hands on my Skip.

I got a call today from a physical therapist who had evaluated Skip's wheelchair to see what pressure-relieving cushion should replace the existing foam cushion. They're looking at the mother of all Roho cushions, which is 4" thick with air bladders and will work with a local agency to get it. The PT pointed out to me something I hadn't been aware of. Now that Skip has had a pressure sore, she is at greater risk for recurrence because the healed skin never returns entirely to its original state. This makes extra care with her seating and pressure management a definite must.

I've also purchased a number of things we're going to need when Skip's here. Since she's going to be in bed 22+ hours a day, I've ordered hospital johnnies, bedpans and absorbing bed pads. I found a good cheap source for twin sheets on eBay and bought them this morning. I got special mugs and foam tubing to build up silverware handles to make it easier to eat in bed. This weekend, I'll be heading out to buy myself a twin bed to use while Skip's in the hospital bed. Then, I'll have to figure out what furniture needs to temporarily be removed from the bedroom to hold all the new stuff. I'm thinking, with the removal of our platform bed, this is also the perfect time to turn the rug, which is long overdue.

Yep, it's definitely feeling real.

My Little Shadows

I'm a big woman, tall and fat, but I cast two little shadows all around the house. Their names are Ruby and Sally, our mini-dachshunds. Without Skip here as anchor (she doesn't move from place to place too often through the day so they can roost near her for big chunks of time), they're forced to shadow me wherever I go.

I am not one to sit too long in any one place during the work day. I think it's my short attention span that makes me go from room to room as I come up with a myriad of things to fill my day. When I head into the living room to sit on the couch and use my personal laptop, they stroll in soon after I'm in position. Sally, smaller and pretty athletic, will jump up on the couch like a cat and take up the primo position, laying alongside me, sharing body heat. Ruby will saunter in behind and come up meekly to the couch, waiting to be invited and then lifted up (she's the biggest "mini" dachshund on earth, weighing in at 20 lbs, so not a jumper by any means). She lies a bit to the side, soon falling fast asleep, issuing deep, contented snores.

When I get up from the couch, they both look up at me with expressions that seem to say, "what are you doing, we're warm and comfortable here ..." But, they give in to the greater need to be with human companionship and follow me to wherever I'm going.

In the kitchen, they have a big dog bed right near my work table. It's on the ground, near the kitchen door, so it's none too warm and, whenever I look down to see how they're doing, Sally is shivering. I try to put a throw over them to keep them warm, but often the act of getting up to get the throw causes them to be on the move again. Then, I get them settled back on their pillow and cover Sally from head to paw. Ruby doesn't get cold, so she doesn't get the full body covering.

They're all too familiar with the month-long routine of me heading out in the evening to visit Skip. Just before I head out, I'll send them out to pee. When they come back in, Ruby knows to go right into the crate. Sally has to be cajoled in, she's trying to delay the inevitable. When I come home, and open the crate door, they are so excited, jumping and showing their delight. It makes an otherwise empty house a lovely home to return to.

Rehab Routines

I visit Skip each evening at the rehab hospital. Even on the weekends, I like to spend most of the day here at the house and then head over as it starts to get dark. During the week, I go over after the workday officially ends at 5pm. I typically stay for a few hours, primarily because I don't like to leave the pups in their crate for too long.

There isn't much to do in the rehab hospital. So, I've come up with some things I can do in Skip's room to keep busy.

• Clean up. The aides and nurses have a tendency to leave junk on all available surfaces, including tables, the floor and the empty bed in the room. I organize all the junk, throw out the debris, and wipe up Skip's patient table and the guest table. With flowers, cards and gifts she's received, I've organized them, watered, thrown out as they've aged.
• Prep water bottles. Skip needs to hydrate frequently with her Clinitron bed sucking a lot of moisture out of her body. Because she'd spill a glass of water, she uses big water bottles with sports caps. I rinse out and refill the ones she's emptied since my last visit.
• Help with self-care. Skip loves to keep her nails short but can't sit up high enough to handle the trimming herself. So, I do that. So far, I've only clipped the skin once and it didn't draw blood, just the top layer. I also handle toenails. She gets dry skin and her elbows in particular are getting quite dry (the bed again?), so I apply a lot of cream when I'm there. (Her aides apply cream in the morning.)
• Untangle cords. The phone, the TV controller/call button, the wound vac power cord, the wound vac hose from body to vacuum and the IV line are all cords that end up on or near Skip's bed. The IV line is kept away from all the other cords so no tangling there. However, every day when I come in it's mind-boggling to see how tangled the other lines have become. I like untangling them to ensure Skip the best access to her key lifeline: the call button. Since she can't walk, if she has a problem and can't manage to get the call button she's in trouble until someone stops by for some random reason.

Besides keeping me busy, it also helps us both feel better. Skip is getting some care from me, has her few square feet of space in better shape, and I get to be a help. Fortunately, though, I'm looking forward to only doing this for another 10 days, then we're gone!

Battling Ennui

Well, I thought the term "ennui" was the best fit to describe how I feel. When I looked up the definition online, I knew it was a perfect match ... the Encarta dictionary defines ennui as: boredom from lack of interest: weariness and dissatisfaction with life that results from a loss of interest or sense of excitement.

Too much time on my hands? Too few things to do at home that can't be put off (I'm great at procrastinating)? Too much time alone? Sad my wife's not here at home with me? Concerned about the changes in progress for us and our lives? Feeling uncertain about how the first few weeks with Skip at home will be?

Yes to all of the above.

I am bored, weary and dissatisfied. I think I need to be back working 5 days a week with Skip here at home needing lots of time and attention. I think I need the uncertainty of our new routines and life solved so I understand our new rhythms and the demands that will be placed on me.

When all that's in place, I'll be cranky at times, but I won't be full of ennui.

Home Alone

Yesterday marked three weeks since the day Skip was taken off to the hospital in an ambulance. Since then, I've been living here at home with no other humans, just the two pups to keep me company.

It's weird being here alone. And, it really is alone as the parade of people coming and going from the house has all but stopped since they were all here (save one) because of her health and care needs.

At first the dogs were very unsettled. They seemed pensive, as if waiting for Skip to reappear. The first few nights at bedtime they displayed the most confusion. Sally normally sleeps on Skip's legs, so she was really discombobulated, Ruby eventually settled into her normal spot at the head of the bed, between my pillows and Skip's.

I buy almost no food; I hardly ever cooked when Skip was here, now I have even less reason to do so. I need coffee, milk and cereal for the morning. I have been making vegie rollups for a late lunch. For dinner, it's either takeout coming home from the hospital or a snack when I get home.

The house is really, really quiet. In addition to the lack of people coming and going, there TV is hardly ever on. Skip always has the TV on, but I love to have it off. I've been watching football. And, I started watching a TV series called Criminal Minds that we'd never seen before. Other than that, nice and quiet.

I have few conflicts between caregiving demands and the rest of life here at home. I make a few calls to follow up on things with the rehab providers and to speak with Skip. Other than that, I never have to find a way to shoehorn everything into the day.

I'm not taking Ibuprofen anymore. Even though we have a lift system in the bedroom and bathroom that keeps me from having to lift Skip for transfers, I realize I still do a lot of moving Skip around when she's here. You know, for all those tasks of daily living where she needs my assistance. Not doing any of that now, of course, so my creaky shoulders aren't barking at me throughout the day. Now, they only remind me that they're screwed up when I get dressed.

The biggest difference of all is the time out of the house. Working from home, with Skip here, I was leaving the house only 2-3 times a week. It was primarily to run errands or go to Cape Cod to visit my parents every other week. Now, I have to put on clothes suitable for going out, put the pups in their crate and head out to Skip's hospital every day. Of all the changes prompted from Skip's stay in rehab, this is the best one for me. I was becoming a bit of a hermit, preferring not to leave the house if at all possible. It's good to be back out in the world more.

When Skip comes home (currently projected for January 14th), the dogs will first bark when they see her come out of the garage door on her way towards the house. Then, they will whine and jump all over her. They will be ecstatic to have her home. I will need to stock up on groceries. The TV will go on and the negotiations over what to watch will begin. I will again be balancing all the demands on me to satisfy all the needs of work, Skip and maintaining a household. After a few days, the Ibuprofen bottle will be back out on the bathroom counter. I can't wait!

Christmas Began at 2am

What is it with 2am at Skip's rehab? Again the phone rang last night at 2am. Again, her blood pressure was low and they wanted to send her to an acute hospital ER. I tried to stop the madness, inquiring about hydration to get the pressure back up. They claimed they'd hydrated her and it hadn't brought the BP up to an acceptable level.

When I hung up the phone, I lay back in bed and started to consider the consequences of an ER run on Christmas morning. Figured this would lead to another admission and changes to some plans set up for the day. While I was contemplating who would need to be called as a result (though at a normal, human hour, to be sure!), the phone rang again. This time, it was the nursing supervisor informing me that Skip's BP was back up and the ER trip could be avoided. I was, if that seems possible, even more annoyed with this call than the previous one. In 15 minutes the situation righted itself and suddenly the drama was over? Feedback about this will be provided on Monday morning to Skip's doc and her case manager. There needs to be better management of hydration. Clearly, the reactive approach taken coming out of last weekend's debacle isn't sufficient. Proactive hydration via IV will be necessary.

Wound up, I couldn't fall back to sleep, so sat up for a bit. Finally went back to bed and slept until 8.

The original plans, thankfully, could stay in place. Our friends D&D took great care of us today by preparing a wonderful dinner, all plated for us, that I picked up at 1 to take to Skip. They also watched the dogs while I was at the rehab hospital. My brother and his family stopped in for a visit. I was so pleased they came by; it meant a lot to Skip and me that they did. The dinner was great. It was the best I've seen Skip eat since going into the hospital on December 7th.

I stayed with Skip until the early evening. After dinner she was drowsy and actually fell asleep twice. I chalked this up to poor sleep the night before. After picking the pups up from D&D's, I headed home for a quiet evening. With Skip in the hospital, I am able to watch all the football, college and pro, I'd ever want to see. Tonight's NFL game was a super snoozer, though.

Merry Christmas, Skip! And, Merry Christmas to you.

Christmas Eve

When I was a kid, every Christmas Eve we traveled the ~20 miles into Boston/Cambridge and had dinner at the home of my aunt and uncle. They were my father's oldest brother and his wife, both doctors with no children. For many years, they lived in Cambridge in a house near Harvard Square, with my aunt's sister and father also residing there. The house wasn't kid friendly, the food was extremely esoteric, including goose stuffed with oysters and chestnuts and a capon, and I had very mixed feelings about the event. Parts of it I enjoyed, such as the other friends and family members from around the world who joined the festivities, that I'd never have met otherwise. Other parts I dreaded, such as the part of the evening where we had to sit through my aunt and uncle opening every gift they received for Christmas (their tradition was to open presents Christmas Eve rather than Christmas morning).

When I hit my early 20s, I purposely started entertaining with friends on Christmas Eve to continue the tradition of a celebration that night, but one that would be more to my liking. During our years of apartment living in Boston and surrounding cities, Skip and I entertained a lot and liked having our home be a gathering place for friends.

When we moved into what had once been my parents' house in the suburbs of Boston, we continued with our Christmas Eve dinners. Over the last handful of years, with the increasing caregiving load making entertaining here more difficult, we began having the party at the home of friends, but I still prepared a lot of the dishes, including the centerpiece ... a butterflied leg of lamb, marinated in a Julia Child recipe my mother turned me on to 30 years ago, then grilled.

Christmas Eve is a party night in my world. But not tonight. I saw Skip earlier today, but had to come home in the early evening to free the pups from their crate. Tonight, my Skip is alone resting in her rehab hospital room and I'm chillin' on the couch with the pups by my side. This is our 29th Christmas Eve together and the first we've spent apart. As Skip would say, "it's just not right!" (I wish you could hear her say it in her wonderful Boston accent.)

Merry Christmas, Skip! And, Merry Christmas to you!

Yep, I'm Human

I hate to admit it, but I am human. This was brought home to me yesterday as I experienced a temporary meltdown.

I have been Superwoman for many years. I did it all. Managed a series of demanding consulting jobs over the last 25 years that frequently involved long days and lots of business travel. Helped Skip through 20+ years of progressive MS, figuring out new ways to deal with each new symptom that emerged, solving ever more significant problems. Became a full-time caregiver as her ability to handle the tasks of daily living fell away. I used to have a social and volunteer life as well. We used to entertain here and there, with Christmas Eve's special dinner of butterflied leg of lamb, scalloped potatoes and sauteed red cabbage my personal favorite (all of which I prepared). We were actively involved in the local Unitarian Universalist congregation for a while, I even served on the board for 3 years. We used to take vacations to distant places twice a year. And, I loved the planning of those vacations almost as much as taking them.

I was feeling pretty tapped out before Skip went into the hospital two weeks ago. The Superwoman cape was getting quite tattered, showing its age. The demands of caring for Skip have basically crowded out all the non-essential stuff and I've been feeling pretty careworn. The wound care, which involved daily visits from nurses, feelings of frustration and fear and additional effort, were piling on too much and I could feel the strain. With all this, though, Skip was at home and we had control over our daily lives and routines.

Now we're in a whole new world, where control is gone. I am no longer hands-on for Skip's care. Instead, I must stand by and watch as things are done for her. Sometimes I think a great job is being done; sometimes, not so much. And, other people can decide to send her off to the hospital at 2 in the morning when all she needs is some hydration (that's really what the problem was). How come I know that the special bed she's on can cause dehydration and the folks who are supposed to care for her in rehab don't so they don't take countermeasures such as daily hydration IVs?

Okay, so I'm not Superwoman. Never really was, of course, but I pulled off the impersonation for a very long time. Now that I'm human, I admit the frailty of humanness. But, can I learn to ask for the help we humans all need?

2am Call

I hate it when the phone rings after about 9:30pm. To me, 9 is pretty much the latest time a purely social call can be placed to a friend. Late night calls in our house have all been about bad things. The ones I recall are all related to the impending deaths of both of Skip's parents and one of her brothers.

The phone rang at 2am last night. It was the rehab hospital letting me know Skip's blood pressure was very low and they were sending her to the emergency room. I asked if she was going back to the ER at the hospital she'd been transferred from. The answer was no as we were in the middle of a blizzard and they wanted to transfer her to the closest ER to cut down on distance travelled.

I lay in bed trying to decide what to do next. True, it was snowing and I very much hate to drive in snow. It looked like only about 3" had fallen by then, but it was projected we'd get snow all night and until about noon. If I managed to get to the hospital in one piece and stay with Skip, I'd be completely wiped out. I have a bunch of work that I'm behind on that I planned to tackle today ... how well could I accomplish that if I was sleep deprived and emotionally drained from a vigil in the ER?

I tried to sleep, but couldn't. Eventually, I got up and called the ER she went to. I spoke to her nurse. She'd only been there briefly, but her blood pressure was higher than at the rehab and she was awake and mentally clear. The nurse said they were at the very beginning of their assessment and suggested I call back in an hour. I went to bed and immediately fell asleep, waking up 3 hours later.

Before getting out of bed, I called back to the ER and spoke directly to Skip. She told me they were admitting her overnight. She was dehydrated. They were testing her for c diff (please, let this test continue to return negative results). Her butt was hurting as she'd been lying on a gurney without being turned for hours. They were trying to locate a good bed for her as an inpatient. She didn't want to be admitted, she wanted to go back to the rehab hospital where she felt they'd be able to care for her wound better.

I then spoke with her nurse to relay Skip's concerns and request to go back to rehab. (I guess there's nothing like a real hospital to make a rehab setting more palatable!) The nurse outlined some reasons why an acute care hospital made more sense for an overnight stay and also mentioned the concern with transferring her via ambulance with the roads in such bad shape. Since it was clear to me Skip was bound for a night in the hospital, I tried to enlist the nurse as an advocate on Skip's behalf (since I couldn't be there in person). We spoke about the need for a bed to help her wound and the troubles she'd had in her previous stay at that hospital 5 years ago.

Thirty minutes later, Skip called back to say she was on her way to her room. I spoke briefly with the nurse who indicated the steps they had taken and were taking to handle Skip's special needs. When the snow has stopped, I expect I'll get in a visit as the roads will be safer.

With this crisis passed, now I'm beginning to worry about finances for the first time. Medicare has a per-admission inpatient deductible of about $1,000. One admission wasn't a fun expense to look forward to, but manageable. Does each of these new hospital stays count as a separate admission? If so, we're at $3,000 and counting. I've got some research to do. (UPDATE as of 12:20pm: the inpatient deductible is charged once per "benefit period." A benefit period begins when admitted to a hospital or skilled nursing facility and ends when there's been 60 days not in a hospital. So, all 3 admissions to hospitals and rehab have occurred within this one benefit period. Sounds like just one inpatient admission deductible will be due. Phew.)