Tuesday, December 29, 2009

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!

Friday, December 25, 2009

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.

Thursday, December 24, 2009

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!

Monday, December 21, 2009

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?

Sunday, December 20, 2009

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.)

Friday, December 18, 2009

Space Age Bed

Yesterday afternoon, I met Skip at the Wound Care Center for a visit with her surgeon (she was transferred via ambulance from rehab). The surgeon looked at the wound, did a little cleanup, and declared that it looked really good. She doesn't have to see him again for two weeks (New Years Eve day).

When I met her back at her room at the rehab hospital, a new bed had arrived. It's called a Clinitron Rite-Hite (more info here. I tried to find a picture that I could post, but I couldn't pull one from the brochure at the site my link will take you to.) The top half of the bed, where your back will rest, is fairly conventional looking. From the small of the back down, it's a whole new animal. A permieter of inflated air gives the bed shape. Inside that wall of air is a sack of sealed silicone beads that continuously move around, creating a support surface that's like liquid. The marketing stuff calls it "fluidized air."

There's no need to turn someone lying in a bed like this. The movement of the silicone beads handles everything so pressure is offloaded continuously. It was very cool to watch the bed at work, with Skip and the bed's surface moving a tiny bit all the time.

There might be one issue with this bed. Apparently, it's heated to about 82 degrees Fahrenheit, so it doesn't always work out for individuals with MS, who can really feel the effects of heat. Skip did not mention any feelings of discomfort from overheating during the 2 hours I was with her yesterday evening (imagine Cranky with fingers crossed).

This bed sounds like a wonder. The brochure I read about it states that outcomes are much better on this kind of bed than an air bed. For a particular wound size, the healing time in an air bed was 70 WEEKS. On the Clinitron, it was 15 WEEKS, and improvement of over four times.

Rental cost is $85 per day. This is not the bed that's been ordered for us as a rental for when Skip comes home. If she tolerates the warmth of it and it seems to be working out, I'm going to see if we can change to this bed for home. The Hill-Rom website shows a home version.

Thursday, December 17, 2009

Hopeful Birthday

Yesterday was Skip's 54th birthday. It was also her first full day in rehab. On Tuesday afternoon, she was transferred to an acute rehab hospital about 30 minutes from our home. Apparently, acute rehab hospitals are set up to handle patients with both significant medical issues and rehab needs. She has settled in well to a large, single room. The place is clean, the staff is good and the food is better than at the hospital.

So far so good, from my perspective. Yesterday was a very busy day. I took it as a vacation day, so spent most of the afternoon and the early evening with Skip. Hardly 15 minutes went by without someone else coming in. In particular, I met her attending physician, the physician assistant that will do the day to day medical stuff, her occupational therapist and the hospital's social worker.

The rehab folks are very much about getting people up and about, about helping them regain lost functionality and finding new tools for independence. I am delighted with this perspective and think it will be valuable for Skip since she's been losing her arm and hand strength. Maybe in addition to helping heal the wound and kill the infection, she'll come out of this even better than when she first developed the wound.

She'll definitely be in rehab for Christmas, so I'm planning to bring in dinner that day for her. It won't be the best place to eat Christmas dinner, but we'll be together, which is the most important thing.

Tuesday, December 15, 2009

I am Consumed

I am so caught up in Skip's seizure, wound, surgery, hospitalization and imminent transfer to rehab that it's easy to forget the rest of the world is moving along. I see the Red Sox missed out on a couple of great free agent pitchers. The financial markets seem to be holding up well at year-end. Obama is following his predecessor in a misguided troop expansion in Afghanistan (at least, I assume it's misguided, I haven't paid enough attention to really know). Christmas tree lights are up all over and other folks are worried about completing their Christmas shopping, wrapping gifts and getting their family visits firmed up.

Someday I'll lift my head up to look around at the rest of the world, but right now, dealing with the overwhelming health issues (oh, and trying to get my paying job done) are about all, in fact more than, I can handle right now.

[end of whine, but still overwhelmed]

Sunday, December 13, 2009

I'm Skip's Wife

Quick update: Skip is truly now into the long, slow recovery phase. Truly, the crisis has passed. Phew! Yesterday, 6 different friends stopped by for a visit with Skip during the afternoon, which was very welcome. We've been getting a lot of love and care through emails, calls and this blog, but there's nothing like a hug with real arms and a chance to be surrounded by friends in the flesh to make you feel loved and supported.

In September, I wrote this piece "Do We Have to Get Divorced?" because I'd found out that the premium for state-sponsored health care was huge if my income was factored in but zero or close to it if only Skip's income was used. For disabled people with this coverage, 40 hours a week of home health aides is included, which made the coverage very attractive, though not so much at the married premium. Since we were doing okay at the time with the amount of aide support we had (the intrepid MW), I left things as they were and we remained married.

With Skip's stay in the hospital, I am so glad we did. I know we'd be treated with respect as a couple even if our status was "partners." However, it is wonderful knowing that I am legally afforded the status of next of kin in the healthcare setting. And, it gives me a thrill every time I introduce myself to yet another nurse, aide or doctor as Skip's "wife." I feel I'm doing my part to help the heterosexual world grow accustomed to knowing people who have now entered into a same-sex legal marriage here in Massachusetts.

As an aside, I had a cup of coffee and a chat in the hospital cafe with one couple who had stopped by to visit with Skip. They, too, are married. We got into a brief conversation about the terms we use to describe ourselves in relation to our spouse. They use "spouse" because to them, the term "wife" carries with it lots of negative connotations because of the historical (and current) subservient relationship many wives have to their husbands. I said I use "wife" most of the time because, in its purest sense, wife is the term given to a female person in a marriage. Calling myself a wife is also a way for me to "take back" some of the bad connotation and restore it to its purest meaning. This is similar to how I feel about words like "fat." For many large people, they shy away from the term fat because it's so loaded with bad meaning. For me, I describe myself as fat purely as a descriptive term, rather than always use some kind of euphemism like "large" or "full-figured." [end soapbox]

I'll be off soon for the first of two visits to see my Skip today. Looking forward so much to seeing her.

Saturday, December 12, 2009

Success, Now What?

The surgery was a success, according to the surgeon. He accomplished what he wanted, to clean out the "goop," his technical term, from the wound and then attach the wound vac. He also took cultures so they can re-evaluate the cooties (my technical term) that are infecting wound and bone to determine if any adjustment of antiobiotics is required.

From the surgeon's perspective, his need to have Skip in the hospital ends following his first change of the wound vac dressing on Monday afternoon. The neurologist has determined her seizure was most likely a one-time event because of the results from the CT scan and EEG, so he has indicated he won't be following her case any longer at this time. The infectious disease doc stopped by yesterday evening while I was visiting. He wanted to find out more about the allergies Skip has to two antibiotics (discovered during a bout of cellulitis almost 2 years ago) because she showed up at the hospital with MRSA as one of the cooties and vancomycin, a key choice in attacking MERSA, is a problem for her.

(Now where did she pick up MRSA? My only guess is that it was introduced by one of the nurses who came into the house. I know they all take care with the use of gloves and hand washing/disinfecting, but that's the logical conclusion as to its source.)

From an infection perspective, the treatment going forward will be a continuing course of IV antibiotics. The current protocol has her receiving them intravenously four times a day. I found out last week that Medicare does not pay for IV administration by a visiting nurse in the home. As a result, it's being recommended that Skip spend a short time in rehab following her hospital release (tentatively scheduled for Tuesday).

The prospect of rehab has Skip sorely depressed. She wants to come home. She misses me, she misses the pups, she misses her home routines. We miss her too. Personally, though, I think rehab for a short time is a good idea. I can learn to administer an IV but I'd like that to be my responsibility at the tail end of this process, not for the long haul. Also, I'd like to see her get a bit stronger so she can do more on her own with her hands before she's left to her devices at home. Finally, I am hopeful she'll get daily physical therapy at a rehab hospital to help get her on the road of building back up her arms and hands. We have to stop the downward spiral of weakness that she's been in lately (I think this is a result of the infection, not an MS symptom).

I gave her my little pep talk about a rehab stay yesterday evening. However, I know it was largely falling on deaf ears. She will be very unhappy about this prospect until it occurs and, perhaps, during the entire time. I am hopeful she can eventually look at this as a time where she can take advantage of the resources available in rehab rather than as a necessary evil to be tolerated until she can get home.

As a backdrop to all of this, is the unfortunate timing. Her birthday is Wednesday and Christmas, normally her favorite time of year, is in less than 2 weeks. It will be a bitter, bitter day for her if Christmas finds her in rehab.

I'm sad for my Skip.

Friday, December 11, 2009

Surgery Today

As I write this, it's 7:05am ET and Skip is scheduled for surgery at 7:30. Her surgeon estimated it would last about an hour, then she'd need an hour or so in the recovery room. I'm estimating she'll head back up to her room mid-morning, and I plan to join her then.

I had figured it was a bad use of my limited time away from the dogs and work to be at the hospital during the surgery and initial recovery, when I couldn't be any use to Skip for support. However, I am doing a bit of second-guessing of myself. Despite that, I still think the plan is the best use of a key limited resource: me.

Her surgeon called me yesterday to let me know there is infection in the bone on the side where her wound is, as was reported to me by the internist. He said the other side isn't infected, though. Instead, what's there is deep tissue injury which, if not dealt with, would lead to another pressure sore. The air flow mattress then will have two purposes: help heal the existing wound and keep this incipient one from blossoming into another wound.

I'm thinking hopeful thoughts about this surgery. This is a very important step as it will clear away the necrotic tissue in the wound and create a good bed for healing. They'll attach the wound vac when the cleanup is done to supercharge that healing.

I worry about my Skip, though.

Thursday, December 10, 2009

Bad to the Bone

Yesterday morning, I spoke with the hospitalist (an internist) working on Skip's case. She said the MRI results indicated bone infection (osteomyelitis), and her take on it was that it was very significant. Infection was showing on both sides of her hip. She said I'd need to speak to Skip's surgeon about it in regards to treatment, but she thought the treatment would be protracted and significant, indicating that surgery would likely be used to help clear up the abcesses and dead bone tissue.

Oy! I must confess, this was the most worrisome news to date and prompted a fairly significant reaction in me. And, since it's really the surgeon's assessment and recommendation on course of action that matters in this situation, I felt wound up with the news without any way to put it into perspective as to how we'd get it fixed.

I called the surgeon's office and set up a call with him a few hours later. He had not reviewed the MRI results but said he wasn't surprised that bone infection was present after what he'd seen of Skip's wound on Monday in the ER. He said it had taken a definite turn for the worse. He painted a different picture of the treatment than the internist, indicating the infection would most likely be treated with antibiotics and this could be done at home. Of course, I took this with a grain of salt because he hasn't yet reviewed the MRI results.

I got to the hospital around 4. The surgeon came in shortly thereafter (still not having seen the MRI) and did a short debriding session. He is tentatively planning surgery for Friday. I am expecting he'll have additional insights to offer today following his review of the MRI.

In other news, Skip had a special IV line set up (PICC) that can be used for an extended period to handle her daily antibiotic regimen. She got a unit of red blood cells transfused while I was visiting and antibiotics (Zosyn) were next to be administered.

Skip isn't happy to be in the hospital, of course, but she seemed to be in pretty good spirits yesterday. She's still very weak, so I fed her dinner during my visit. I've brought in some books to read to her, and am keeping her up to date on postings here, especially comments, as she's really appreciating them. (I am, too.)

Tuesday, December 8, 2009

All Seized Up

During the night on Sunday, Skip was mentally confused and kept me awake from 2-4 with continuous requests to adjust her position and remove the packing from her wound because it was irritating her. This was totally out of character; honestly, she hardly ever wakes me up during the night for anything (which is lucky because I typically don't react well to such wake-ups). I got up to begin work around 6 or so and waited until about 9:30 to go in to start her day with her morning pills so she could catch up on the sleep she missed.

I went in with her pills. When she awoke she stated, "Mary full of grace." What!?! This from a lapsed Catholic girl who has never been to a Mass of any sort in the 28 years I've known her except for funeral or wedding masses. I asked her what she was talking about and she looked up at me with her eyes opened as wide as they could, pupils roving wildly around (imagine an old movie sterotypical representation of a crazy person). Her crazy look and out of control pupils scared the bejesus out of me.

Then, her body started to spasm uncontrollably. At first, I thought it was her leg spasticity being a bit extreme because she hadn't yet had her morning pills. Then, I realized the spasming was consuming her entire body. Even the muscles beside her eyes were spasming. She began to drool. I had never seen such a thing happen to Skip or anyone else.

In a minute or two, the spasming stopped. There she lay, eyes partially open, breathing deeply, emitting a snorty, snoring sound, drooling continuing. I called out to her to try and rouse her. No response. I tried not to panic, but really, really horrible thoughts cruised swiftly through my brain.

This was way beyond something I could handle. I called 911 and described what was happening. Five or six EMTs arrived. They hooked her up with an oxygen mask, took her blood sugar, which was low but not alarmingly so, and assessed the situation. They transferred her to a stretcher and took her off to the emergency room.

While waiting for the EMTs, I called the office of her surgeon who was scheduled to debride her wound the next day and spoke with his office admin. He called me back while the EMTs were here, so he got the lowdown.

I showered, sent an email out to colleagues letting them know what happened and that I wouldn't be working and called the ER to let them know I was on the way in case Skip woke up and was freaked out that I wasn't there.

When I showed up in the ER, they brought me right into her room. She was settled in on a gurney, with an IV running. She said hi and smiled, seeming very unconcerned. Not at all the Skip I expected to find. She was just barely with it but was only marginally aware that she wasn't hitting on all cylinders.

A bunch of tests were performed, including a CT scan, chest X-ray and an EKG. Many vials of blood were drawn. This hospital uses MDs called "hospitalists," and the hospitalist handling the admissions for Monday stopped by to get more info from me on the seizure and to update us on what the test showed. Fortunately, nothing showed up of concern on the CT scan. The blood work showed electrolytes out of whack. She clearly had an infection. So, the plan was to admit her and get everything stabilized so the surgery could occur.

Skip's surgeon did stop by for a quick visit including some wound cleanup and the wound nurse came in twice, first to pack and bandage the wound and then help out the surgeon and then rebandage after his work.  She also organized the special mattress for Skip's hospital room.

By mid-afternoon, I knew Skip was really coming back. How could I tell? Because she was becoming a fusspot! Her genial good spirits receded as her awareness returned. At times we joke about her being a bit of the "princess and the pea," because she can be very persnickety about her comfort. When a bit of the princess and the pea emerged, as she fussed about her situation, I knew my Skip was mentally on the mend.

Around 5pm, we got up to the hospital room. Over the next hour or so, the staff got Skip settled in and oriented.

I left around 6 and went home to relax and get the pups out of their pen. It was very different being home alone. The pups and I headed off to bed fairly early and I slept soundly without interruptions (yay!).

All in all, I'm impressed with the care Skip is getting. The surgeon, hospitalist and an infectious disease MD are all working in a coordinated way to bring Skip back to health. The nursing and support staff in the ER and the ward are very professional while still being warm and caring. It's very comforting knowing that she's in such competent hands.

I'm running out of steam. So, tomorrow, I'll provide more updates on what happened on Tuesday and what is likely to happen in the next few days.

Quick Update - Surgery on Hold

Just a quick update as I have to head over to the hospital to visit Skip. Yesterday morning, she had a seizure and I called 911 so she could be rushed over to the ER of the hospital where the surgery is to occur. Doesn't look like anything wrong in her brain such as a tumor, just bad stuff accumulating to send her into the seizure. Stuff like cellulitis (infection) around the wound, electrolytes out of whack, low red blood count.

So, she's set up at the hospital with the special mattress to help her circulation for wound healing. She got IV antibiotics last night. Is getting a transfusion of one or two units today. Basically, getting her stable so they can proceed with the surgery to do a major debriding of her wound.

In the meantime, her surgeon will be visiting and doing minor debriding every day.

This evening, I will provide additional updates and give more info on the seizure itself ... a very harrowing experience. Think good thoughts about us!

Saturday, December 5, 2009

"Sorry For Your Troubles"

When Skip's father died, and we spent a lot of time at wakes and his funeral, I heard a lot of friends and family saying to Skip and her siblings, "sorry for your troubles," as part of their condolences. We picked up on that phrase and use it here at home as an acknowledgement of rough times.

Well, if there ever was a time to acknowledge the roughness, this is it. Skip's in a bad way. Her wound is getting worse and will require major changes in her life to get it to heal.

On Tuesday, Skip is going in for day surgery (late in the day) to have the wound cleaned up (debrided) in a more controlled environment than the clinic setting. The plastic surgeon should be able to get all the junk removed and set up the wound for healing. At that time, they'll reattach the wound vac.

She'll spend at least a few days in the hospital. Actual duration is still TBD, but I am hopeful that we can get the special bed that's been ordered delivered to our home ASAP so she can spend a short time in the hospital and then come right home to the bed. (I'll provide more details on the special mattress that promotes circulation when I get the official name of it and can look it up on the web.)

My experience with hospitals and their ability to handle the special needs of the handicapped is poor. Skip is staying at a different hospital than the one she's been in twice before. Here, I am trying my best to get her needs identified in advance in the hope that they'll be prepared.

The only other time Skip had day surgery, there was an expectation that I'd get her changed into a gown and set up on a gurney and NO ONE helped me! The surgeon's office contacted the patient advocate at the hospital where he's affiliated and I spoke with her yesterday. She is going to work with 1) surgical day care so they're prepared to provide me with assistance, 2) the in-hospital wound nurse so she can order a special mattress for Skip and 3) will prep the staff on the floor where Skip stays so they'll understand her special needs. She also reinforced that I should feel free to call her if any issues arise.

This is the lowest I've ever seen Skip. Her life has altered for the worse ... she's not out of bed for long each day. She is in constant pain. She's stressed out and that is causing her to be very weak, so often her arms and hands barely function. She anticipates that she'll be lying in bed for 6 months healing and this will have a permanently debilitating effect on her, so she'll slide downhill quickly as far as upper body strength and arm/hand functionality (I, too, worry about this). Yep, things are pretty grim in Skip's world view.

I was pretty damned cranky about things for a while, but just recently a switch clicked in my brain and I've emerged from the worst of that so I am now in a better place to provide emotional support to Skip. I hope I can keep the switch clicked. I've always been there for the physical care, but sometimes I'm just not available for the emotional care when I'm in my own dark and dismal place.

Think good thoughts about Skip and her wound on Tuesday. Wish her luck for successful surgery and her embarkation onto a healthy recovery. Oh, and wish me luck for the strength to be supportive and wonderful to Skip now in her time of greatest need.

Sunday, November 29, 2009

Two Thanksgivings

Thanksgiving is my favorite holiday. It has all the good feelings and visiting with family and friends that Christmas has, but doesn't have the craziness of shopping, wrapping and money spend that goes with Christmas.

Skip and I have hosted our fair share of Thanksgiving dinners, including a number with both her parents and mine in attendance. The days where we hosted are long gone, though, and we have benefited from the generosity of family and friends for many years.

This year, we went to Thanksgiving at the home of our friends D&D. They are famous for their dinners and parties for friends and family, and deservedly so. One of them used to be a chef and we first met them by having dinner at the restaurant they owned. There were 15 of us at dinner. Family for both D's and friends gathered at a table set with wonderful, traditional stuff ... turkey, gravy, stuffing, mashed potatoes, sweet potatoes, mashed butternut squash, warm rolls, cranberry sauce, roasted brussels sprouts (these were a revelation as I'd never had them roasted before).

We ate well, watched football, had a chance to visit with folks and really enjoyed ourselves. Skip was up and in her wheelchair for longer than she has been of late, and she tolerated it well.

The plan had been for me to cook a turkey and fixings on Friday so we'd have leftovers, since what is Thanksgiving without them? D&D had a ton of food left, including a second turkey that hadn't even been cut into for dinner, and loaded us down with a bit of everything. I reheated it all on Friday evening and we enjoyed it immensely. Our turkey went into the freezer for some weekend during the winter when roast turkey followed by turkey soup and turkey tetrazini will be quite welcome.

My parents saw my sister and her husband and four boys on Thanksgiving day, so they invited my brother, his wife and three kids and Skip and me for yesterday, Saturday, at their house on Cape Cod. My dad's aide would do all the cooking and cleanup so we could even be lazy to boot. With her wound, Skip wasn't up to the trip (four hours of jostling in the car over the round trip was especially a concern). I waited around at home until 3pm for the nurse to come and change Skip's packing and bandage, then got her up and in the chair and headed down to the Cape. Fortunately for me, dinner was scheduled for 6pm because my nephew had to work and wouldn't arrive until 5:30. I got to my parents' house about 10 minutes before he did.

We sat down to a lovely dinner of boneless rib roast, scalloped potatoes, broccoli with aioli sauce, creamed onions (one of my mother's specialties) and fruited breads my sister-in-law made. My brother's kids are all in their 20s and have turned into great young adults. I am not so comfortable with kids and never really knew what to say to them or my sister's kids when they were young. Now, they're of an age where I find it much easier to chat with them and, I'm sure, they're more comfortable talking with me.  I didn't get much chance to chat with my parents on this visit, but I know they were very happy to see us all together, breaking bread and having lively conversations.

And, the entire group, with my sister's family added in, is getting back together the Saturday after Christmas at my parents' house. I'm very much hoping Skip will be up to that trip. And, if she comes, we'll bring the pups along, too. They'll get serious loving from all my nieces and nephews.

Thursday, November 26, 2009

On Then Off

The box containing the wound vacuum and supplies arrived on Tuesday morning. Tuesday afternoon, the wound nurse installed it. It worked fine, suctioning and burbling through the night. On a lift Wednesday morning, the vacuum seal was broken. Unfortunately, before I could reseal it with fresh adhesive, the black sponge inside the wound unraveled and fell out.

The wound nurse said she'd come over on Wednesday afternoon to insert a new sponge and get the vac going again. Unfortunately, when she came to look at it, her assessment was there was too much slough in the wound to use the vac. Apparently, you shouldn't use it if the wound's surface has too much slough and Skip's wound didn't pass the test.

So, she put in some Aquacell AG for overnight. Today, Thanksgiving, she came in the late morning (even though she isn't working today!) and changed the dressing. She was very pleased with the results of the Aquacell AG overnight and expects we'll keep using that until the next steps are worked out with Skip's MD.

At this point the nurse will communicate with the plastic surgeon we're working with at the Wound Care Center to see if Skip should go in for surgery to be debrided so the vac can start back up as soon as possible.

Skip's physical therapist is recommending a specialized hospital bed that promotes circulation and requires Skip to stay in it virtually all day. Not sure when that will happen, but we're talking about taking the queen-sized platform bed out of the bedroom and replacing it with the hospital bed and a twin for me. This way, we can continue to sleep together but Skip can benefit from the therapeutic features of the hospital bed.

We're hoping the bed option gels together much faster than the wheelchair did. The wheelchair took over one year from point of selection to delivery.

Oh, and, Happy Thanksgiving, my American friends!

Monday, November 23, 2009

On the Brink of Vacuuming

I thought about the title of this post and thought things like "update on the wound" and "wound status" probably wouldn't be too enticing in the blogrolls of my fellow bloggers where I'm listed. Better to tease the potential reader with the title above.

Anyway, now that you're here... I'm back in the blog world with an update on Skip's wound.

We went on 4 successive Thursdays to the local wound clinic for debriding by a plastic surgeon. This is the process of removing slough and necrotic (aka dead) tissue from the wound to leave a nice, healthy wound bed, providing a good site for healing (FYI - do NOT go to Wikipedia to look up the definition of debriding unless you have a strong stomach. The photo accompanying the article is gruesome.). The second visit wasn't the most fruitful debridement because Skip's blood sugar was out of control (she has Type II diabetes) and they were very restrained as a result. They also sent us off to the Emergency Room after the appointment. Fortunately, Skip's blood sugar was returning back to normal in the ER so nothing further was required; we still have no idea why it was so high that day as the problem has not recurred, fortunately. The 3rd and 4th visits were very effective and the surgeon announced last Thursday that we could begin the vacuum wound treatments.

The device arrives tomorrow morning and the wound nurse and the nurse in charge of Skip's case are coming for the initial setup. From there on, nurses will come and change the sponge in the vacuum 3 times a week. We'll still need to visit the wound center every other week for a while for a check-in on progress and such. The projected time for healing is 4-6 months. Yikes!

Now that we're transitioning into the healing stage for the wound, the next thing to work on is Skip's environment to ensure such a horrible thing as this monster wound never occurs again. A Roho cushion for her wheelchair has been held up because the company that sourced her power chair are having issues getting Medicare to pony up the $24,000 for the chair and won't get the cushion until that's resolved. I'm not quite sure what the status is on the bed air mattress. We'll check in on that when the nurses come tomorrow. In the meantime, Skip is sleeping on her side (she's been sleeping on her back for years) and is spending afternoons when her aide isn't here lying down. She's changing her position through tilt and recline on her chair throughout the day.

I just checked in with Skip. The pain today is "so-so." Some days it spikes way up, some days it's moderate, but it never seems to go away. I'm looking forward to a pain-free day for Skip.

Thursday, November 19, 2009

Blogging to Recommence Soon

I've been in an ugly place and haven't felt much point in blogging of late. I progressed past hyper-cranky into dread. I woke up feeling dread, felt it all day long and thought dreadful things as I tried to grab some sleep at the end of the day.

Dread is lifting, some hope is returning. Talk to you soon.

Saturday, October 31, 2009

Visit to the Wound Clinic

With Skip's wound not responding well to the treatment prescribed by the wound nurse, we had to pick up things up a bit. We'd resisted going to see a wound doctor because we had no way of getting Skip up onto a table for an examination and treatment. Skip's wound nurse had worked at a different wound clinic at another local hospital and knew there was a setup there for Skip to get on a stretcher and be cared for. So, she arranged for an appointment there on Thursday.

The atmosphere right from when we walked in was very different from what I'd experienced at other clinics, which were always professional, but never warm. Right from the start, everyone was warm and friendly ... from the receptionist to the intake nurse to the wound nurses to the doctor himself, it was a great team. The intake nurse had an excellent means of transferring Skip from her chair to the treatment table using a sheet until Skip's knees and a bit of strength from the nurse and me.

The wound nurse gave us some disturbing news when she measured the wound. She let us know it was 3.8 cm deep. Yikes!

The doctor came in and debrided the wound. We have to go back next week for another round of debridement, with the application of an ointment that will continue the cleanout in between. Once the wound is prepped for healing, he told us they'd use a vacuum approach to promote healing. On Friday, when the visiting nurse came to change the bandage, she was pleased to hear about the vacuum approach since she'd seen great results with that with another client.

I was very concerned about the wound prior to the clinic visit. I'm still concerned but also optimistic about the prospects now that we've got the clinic folks engaged.

The Mother of All Cranky Reasons

In my post on Tuesday night I asked, essentially, why I bother with it all. Why do all this work; why provide all this care? What's the point? These questions were prompted by an outburst I might characterize as the mother of all crankiness. It was caused by a not-so-delightful combination of Cranky Reasons #9 (this freakin' disease), #6 (this shouldn't be happening) and #5 (I get scared) plus an unnumbered reason: enough already. The situation was that Skip's hands were so weak she was finding it too hard to eat her dinner salad and asked if I'd feed her.

This request prompted a cascading series of images in my mind as I imagined helping her eat becoming a part of the daily mix of caregiving tasks. If you're a caregiver, you can become accustomed to a certain level of care that you're providing, but adding new items can be a scary prospect. I reacted very badly to this new possibility.

Right now, we have a pretty good routine in terms of serving dinner to Skip and the level of support she needs that allows me to eat and enjoy my meal at the same time. If I have to feed her, then the entire routine will change and I won't be able to eat at the same time and someone's dinner will be eaten cold (most likely mine).

But, most importantly, if I'm feeding Skip, then this is one less chunk of time I can call my own that is instead given over to caregiving. This is what I most regret about the need to take on any new tasks ... I lose that much more time in my day where I determine how that time is spent.

Tuesday, October 27, 2009

The Unanswerable Questions

I'm having one of those kinds of evenings. Wondering what it's all about. Why are we here? What is all this work for and is it worth it?

I have no religious beliefs to fall back on; I basically come up empty at times like this. Just looking into a black hole when trying to fathom the reasons for it all.

Monday, October 26, 2009

October is Birthday Month ...

... in my family. Today is my Dad's 84th, two weeks ago, my mother turned 81. My brother (who's been spending a lot of time here lately doing home projects) hit 57 early in the month. (My sister and I have July birthdays.)

The proximity of my parents' birthdays to one another led to a wonderful family tradition that went on for 10 or 15 years (traveling up for the get together is a bit too much for my dad now). Sometime each October, the whole family would congregate for dinner in a private room at a local historic inn. This included my parents, Skip and me, my sister, her husband and 4 boys and my brother, his wife and 3 kids. After dinner and coffee, every one in the family would talk about his or her year.

I loved the stories from my nieces and nephews. We'd hear about sports, school, boy scouts, travel. Year over year, it was interesting to see how they grew both in the nature of what they reported and their ways of reporting.

I liked the adults' stories, too. One year, my brother-in-law spoke very movingly of the death of his father earlier that year and how that experience added insight into his relationship with his sons. Even the occasional guest was expected to join in the storytelling. My mother has a very warm spot in her heart for one of Skip's brothers who spoke very movingly about our relationship and my care for Skip during our civil union ceremony in Vermont in 2001. Ever since, he was a perennial invitee to the party and always gave his updates when his turn came.

On Wednesday, I'm heading to the Cape to join my father in a meeting. Afterwards, we'll head back to their house to join my mom for a nice dinner. I'll love seeing them and enjoying their company, but this write-up is making me long for a full-out family gathering to hear the year's stories from all the generations.

Saturday, October 24, 2009

The Front Walk is Done

It's actually been done for about a week, but I haven't gotten around to posting photos. We're delighted with the results. We still have some other work in the front yard, including replacing the lights and modifying the gutters, but this is a huge improvement.

One thing I've realized over the last few weeks, with this work and the work my brother is doing, that home improvement projects I do aren't the only ones that spawn other work. I think it may be that almost ALL of them do! That's been a good thing for me to realize. These follow-on projects aren't due to my incompetence as a home improver, but they are actually quite typical for any home projects.

Anyway ... on with the pics. Before ....

And, ta-da, AFTER!

After the leaves and needles are done falling and then are all cleaned up, we'll put some mulch around the perimeter of the wall to cover the raw earth. (Yet another project spawned by this one. :-) )

Try a Little Tenderness

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

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

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

Thursday, October 22, 2009

Bells are Ringing in My Ears

I don't often talk about any maladies that effect me, but today I want to talk about my ears. They ring.

I know they've been ringing for over 30 years because I clearly remember speaking to a doctor about them when I was 21 or 22. In my late 20s, the ringing was accompanied by loss of hearing in my left ear such that if I was speaking on the phone with the handset to my right ear, I had little awareness of ambient noise in the room. And what I could hear in my left ear was blurry.

The partial deafness and working in a good job with medical benefits prompted my first significant exploration into my ear problems. I went to Mass Eye and Ear, a part of Mass General Hospital, and had all sorts of tests. These essentially determined there was no clearly definable reason for the deafness or the tinnitus.

The hearing loss in the left has come and gone over the years. I have learned to accomodate it by strategic seating in settings where I'm in a group, such as large, in-person meetings and restaurants with a group of friends.

In my mid-30s, vertigo joined in the fun, so I now had a trio of ear issues. This led to the identification of Meuniere's disease as a likely culprit of these issues. My father has Meuniere's, though he hasn't had any vertigo attacks in 15 years or more. (This is lucky for him since his mobility is now impaired by Parkinson's.)

The hearing loss is always there to some degree, the vertigo is a very infrequent visitor, but the tinnitus is always with me. I'm writing about it now because it's really spiked up over the last week or so. Over the years, the loudness and the tone have varied significantly, even varying by ear. With the recent increase in volume, I now have a pulsing, high-pitched ringing shriek localized slightly to the left of center in my head. This is also accompanied by distinct ringing sounds located directly in my ears. When the house is wonderfully quiet in the mornings, like right now, it's presence occupies a fair portion of my consciousness; later in the day, when the activity level and noise increases, competing with the tinnitus, it will fade into the background.

In addition to all of this in the present day, I look at my dad and worry about the future of my ears. He is 84 and has two hearing aids, having worn them for at least a decade. Despite this, he needs to be spoken to in a fairly loud voice and dialogue often needs repeating. I suspect this is in store for me. D'oh!

Wednesday, October 21, 2009

Stop the World!

Warning: drivel ahead!

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

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

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

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

Tuesday, October 20, 2009

Circle of Sh*t

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

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

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

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

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

Monday, October 19, 2009

Caregiver Aids #12: Drug List

Skip takes a lot of prescription drugs. There are so many, I started keeping a list. We bring the list with us whenever we go to a medical provider or the emergency room. It almost always generates a word of thanks from the person handling intake. And, it results in a complete and accurate list of all drugs for the provider who's thinking about prescribing something new.

Over the years, it's morphed a lot. I've now got it categorized by medical condition, describe the pill itself, indicate when it's taken and, when Skip developed some drug allergies a few years back, I added a list of drugs she's allergic to at the bottom. 

Here is a sample of the drug list with some MS drugs left in as examples:

Patient Name

Daily Drug List

As of: Month Day, Year

Drug,* dosage and pill description
For MS Symptoms

Baclofen, 10 mg, white tab, imprinted 10 a

Tizanidine, 4 mg, white flat oval tab, imprinted R180


For Condition X

For Other Issues

As needed:

* Where now available as a generic, the generic is used

  • List as needed

Sunday, October 18, 2009

Shopping Therapy

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

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

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

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

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

Friday, October 16, 2009

Special Appreciation

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

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

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

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

That made me feel great.

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

Thursday, October 15, 2009

Still Cranky

I haven't written about it much of late, but I still get cranky. Especially at bedtime. At the end of the day, I just have no ability to let it "roll off my back" and I can get quite crabby very easily. In addition to the low tolerance level I have at bedtime, I don't seem to have much flexibility in general.

Yeah, it's not just at bedtime. It feels like the demands of life are too high and there's little ability to absorb anything else. Admittedly, my absorption capabilities are higher in the morning than at night, but that's a fairly fine distinction lately.

I'm taking a few days off at the end of the month. I'm hoping to unwind and, if possible, be irresponsible, if only for a few hours. That should take the edge off.

Wednesday, October 14, 2009

To Costume or Not to Costume?

Skip and I are going to a Halloween party. It's a costume party and it's requested that all partyers wear costumes. The last time we went to this couple's Halloween party, Skip wore a simple costume and I was bad, going in street clothes only.

It probably wouldn't surprise folks who read this blog to learn that I'm a curmudgeon who's not much on costumes. And, to a certain extent, not much on parties. I do find, though, that I am usually happy that I went to the party when all is said and done.

Sometimes I'm able to give up my curmudgeonliness and actually loosen up and have fun. I'm going to attempt that here. Skip is all for wearing a costume and has been regularly asking me to look through costume websites to get ideas for what to wear.

It's a struggle for me. I can be such a stick in the mud.

Tuesday, October 13, 2009

No Baseball in Beantown

I wrote a while back (April 13th), the following:

Cranky Reason #8: the Red Sox
Cranky Reason #8: the Red Sox. I have to admit that it's not only caregiving stuff that can make me cranky. I was really looking forward to the Red Sox season starting up last week ... their poor start is making me frustrated and cranky.

De-crank Strategy: Just turn off the game if it's going badly. If they come back and win, I can read about it and enjoy the outcome secondhand. If they don't come back, I don't have to be frustrated by their inability to take advantage of opportunities. I have been employing this strategy frequently already this season.
I noted there's an even better de-crank strategy for dealing with occurrences such as this that are completely out of my control ... don't care! If you don't care about the outcome, then you won't get angry if the outcome is bad.
The Red Sox played well at the start of the season, way way back long ago. As the season progressed, they began to suck. Although they made the playoffs, it was pretty clear it was their play in the first half of the season that gave them the record to clinch a playoff berth. So, I was hopeful they'd do well, but wouldn't have been surprised if they did badly.
Well, play badly is exactly what they did in the first round of the playoffs. But, when they lost the third game in a row against the Angels and were swept out, I wasn't cranky. I had stopped being invested in the outcome. I was disappointed, but that was it. My expectations were very low and the Red Sox met them.
I guess I can learn from this ... in order to get cranky, I have to care.

Monday, October 12, 2009

More Maintenance ... On to the Front Walk

The front walk consists (or, actually, consisted) of cement blocks about 3' X 5'. It's 30' long. The blocks were poured by my father about 40 years ago, with help from a friend and my brother. Over the years, they've moved slightly, sunk a bit in a few places and the wood shims between then has rotted away in some places. The yard has been steadily encroaching on the edges of the cenent blocks. All in all, the thing looked crappy.

We decided to take the leap and have the walk rebuilt. We'd get to raise it up slightly to stop the water pooling, put a short wall along the edge to ensure no further encroachment of the yard and improve the look overall.

The first guy who came to give us an estimate is the brother of the woman who cuts Skip's hair. He is semi-retired, had lots of great photos of work he'd done and gave me an estimate for the work that made my hair stand up. We mulled that over for a while ... could this really be what the walk rebuilding would cost? So, then we called the guy who'd repointed the chimney last year, who'd built some walks for some friends, and he gave us a quote 25% lower than the first guy. Bingo! We were in business.

He came on Saturday, with a crew of two guys, and they made huge progress. Unfortunately, they ran out of bricks and, with the Columbus Day holiday, the store that sold them to the mason won't reopen until Tuesday. So, they did a little bit of work on Sunday, but are now just waiting for more materials to finish the job. We're anxiously awaiting their return so we can see the outcome!

On Saturday morning, the first thing they did was to break up the cement blocks. They did this by levering one up with a pry bar, then the other guy slammed down a sledghammer to break it. Wow, brute strength!

The work in progress is looking great so far!

Sunday, October 11, 2009

Leaf Peeping

Skip, the two pups and I went to our favorite spot for fall foliage viewing today. It's a cemetery in a nearby town that is filled with maples, especially red maples. We decided to head over there today to gawk at the great red maples in all their glory.

The trip wasn't entirely successful. First, we went to a seasonal ice cream/clam shack restaurant that we like to take in here and there in the warm weather. At the tail end of the season, they are open only on weekends, so we thought they'd still be open. Unfortunately, the sign that greeted us said "closed for the season." We decided to postpone eating until after we went to the graveyard as we didn't have a clue what we wanted to eat as an alternative (I'd been thinking fondly of friend clams, clams with bellies, not the strips). At the cemetery, we found lots of color, but mostly yellows ... the big red maples hadn't turned yet.

Nonetheless, we enjoyed our drive through the cemetery. Skip likes to check out the gravestones, I was focused more on the foliage. The weather was mild and the sky was a clear, beautiful blue.

While we drove around, we decided to get Thai food and bring it home to eat. Unfortunately, the place we called was closed as we were between the lunch and dinner hours. Oy! Well ... we ended up with Chinese, which Skip loves.

Saturday, October 10, 2009

Driving to Cape Cod

Today was one of my semi-monthly day trips to Cape Cod to visit with my parents and give them a hand with the bills and their checkbook (though in all honesty my Dad handles 95% of the bills).

I enjoy visiting with my parents and the opportunity to help out. But I think the drive down to the Cape is very restorative for me. I get time alone, time when I listen to music and think. Over the last few trips, I've also started giving friends a call to chit chat, trying to be better about keeping in touch with them.

Shortly after I left the house, I made my first call, giving a ring to Skip's cousin JH. She's a lesbian, married to her partner of more than 30 years. JH's wife has COPD, is on oxygen all day, and the cousin is a full-time caregiver (they're both retired). I've recently started calling to check in and try and give support, as I know full well how difficult and challenging that role can be. And, I enjoy her sense of humor and perspective on things. Then I called the home of two friends of ours that used to live about a mile from us, with whom we once socialized 2-3 times a month, but they moved away about 5 years ago. Our contacts have really dropped off, yet we love them and I want us to stay in touch. We had a nice chat. Couldn't reach the other person I called. (In case you're thinking I was holding a phone and driving one-handed all this time, I do wear a wireless headset and all the calls are hands free.)

That killed almost half of the drive. Then, I fired up the Dixie Chicks and listened to them the rest of the way. I don't usually listen to Country music, but I really like the music and voices of the Chicks.

I realized while I was driving along that I was happy. Very happy. Looking forward to seeing my parents. Enjoying the lovely fall weather, and the fall foliage (nowhere near peak, but still some beautiful spots of orange, yellow and red). Confident that Skip was in the capable hands of MW, and that she would have a good day herself. Not really any particular reason for the happiness, but it felt great, almost euphoric.

I always enjoy the drive down to visit, but this was definitely one of the best. I hope I can recapture that feeling soon.

Friday, October 9, 2009

Drivel Post #1

Some of the folks who read this blog may feel I've already penned drivel in a prior post or posts. I won't take offense if you think so. After all, what's interesting to me isn't always going to strike a chord with you. And, sometimes I can be accused of a bit of navel-gazing.

When I started the plan to post 30 out of 31 days in October, I knew I'd eventually come to a day when the well was a bit dry. Today is that day. I'm a bit wiped out from the week, Friday nights are always the low ebb of the week for me, and I'm needing a good night's sleep to recharge.

I'm relaxing on the couch in the living room. Sally is sleeping snuggled against my leg, Ruby is sleeping, lying on her back, just to Sally's side. Skip is in her wheelchair a bit to my left. She's got her feet elevated. Her rolling table (sort of like the rolling tables used for patients reclining in hospital beds) is in position for her to easily use her laptop. Everything she needs is within easy reach ... water bottles, tv remote, phone, snacks.

I'm waiting for the Red Sox playoff game to start. They're in California, playing the Angels, and the game doesn't start until 9:37. Right now, we're catching the end of the Yankees/Minnesota Twins game and I'm happy to see, in the top of the 9th, that Minnesota has a 3-1 lead. I'm hopeful the Red Sox win tonight as they lost last night and being down 2 games in a best of 5 series isn't a good situation. Considering the late start of the game and the fact that it'll conclude sometime after midnight, I suspect I'll not find out the result until tomorrow morning.

So, just checking in with a drivel-istic update. Hope you're all well!

Thursday, October 8, 2009

Diary of a Typical Day

What's a day like in my life? Well, today wasn't all that out of the ordinary for a work day ... balancing work and personal life stuff combined with visitors to the house. (Speaking of visitors, my brother mentioned to me that he was surprised at the amount of comings and goings with visitors to the house. Every day he was here over the last few weeks, at least one other person came to perform some service or another on behalf of Skip.)

Thus, my day in summary:
  • Alarm went off at 5:30, I only hit the snooze once
  • Got up at 5:40, took the pups out, gave them treats, ground beans, got the coffee brewing
  • Settled in at the computer for personal fun, especially to have time to play the Facebook games I'm presently addicted to. When the coffee was ready, got a cup for myself.
  • Around 7 or so, gave Skip her a.m. pills (I have them all set up in advance)
  • At 7:30, moved into the kitchen to begin working as I had a call with my boss at 10:30 and wanted to get some stuff done before that call and get organized for the call itself
  • At 8:40, got Skip up for her shower
  • At 9:00, while helping Skip with post-shower stuff (hair maintenance and the like), got onto my first conference call of the day
  • Between 9 and 11, worked. Occasionally helped Skip out in her morning routines. Somewhere in there I got dressed. Got load of yesterday's laundry folded and washed/dried sheets.
  • Around 11 or so, my brother showed up to do some more work around the house. In particular, he worked on a balky silverware drawer, sealed a leak in the shower and examined a few downstairs doors that need replacing (measuring and the like).
  • Between 11 and 12, got Skip her breakfast and then got her dressed, including cleaning and dressing her skin wounds that we're managing (they're definitely in the healing mode, but will take time to repair).
  • 12:15 finally got around to having breakfast, my typical repast of high-fiber cereal, fresh fruit and 1% milk.
  • It was a quiet day for conference calls, yay!
  • At 1:15, the intrepid MW (Skip's aide) showed up and took Skip off in the car for a 1:45 podiatrist appointment. The pups, Ruby and Sally, would be unsettled and sad while Skip was gone, hanging out by the kitchen door, keeping their eye on the garage door, until their return.
  • At 1:30, had a check-in with a team member to discuss her current projects and their status.
  • At 2:45, the house cleaners arrived (they were 45 minutes late) for the every other week cleaning. This meant I needed to be careful to keep doors closed to minimize noise of the vacuum cleaner while on work calls.
  • At 3:00, had a client call. It was scheduled for an hour, but all content was completed in 30 minutes, yay!
  • Skip and MW got back around 3:30. Skip never even came in the house, but just went right to the patio so she and MW could have some cigars.
  • At 4:00, got back on the phone with my boss, who'd had to cut the 10:30 call short due to an issue that came up while we were talking. He delegated to me an interesting project for a new service to deliver to our client.
  • Started to wind down work-wise around 5. Got a call from someone at my client who wanted to talk billing and budgets until 5:30.
  • As that call was wrapping up, the cleaners said goodbye (the house smells great when they're done!), my brother wrapped up for the day and Skip and MW came in so MW could start on dinner. She made grilled chicken with BBQ sauce, hash browns and a lovely salad. (It's so great to have someone else cook for you.)
  • At 7, we ate dinner. I cleaned up.
  • Checked in on some work stuff while I watched a bit of the LA Dodgers/St. Louis Cardinals baseball playoff game.
  • Settled in on the couch around 8:30 to play a bit more of my addicting Facebook game. Turned on the Red Sox/LA Angels of Anaheim playoff game. Watching it now.
  • Will go back out to the kitchen shortly to do a bit more work before I shut that computer down for the night. (This is one negative of working from home ... the office is never far away.)
  • I expect we'll head in to bed around 11:30 or so.
And that's another typical day here at the Cranky and Skip house.

Wednesday, October 7, 2009

On To Pine Cones and Pine Needles

Acorns were falling in huge abundance a week or two ago. Today was very windy, and the pine needles fell like snow, the pine cones dive-bombed all around us. Sitting in the house today, we heard almost continuously all afternoon ... pow! pow! pow! as the pine cones hit the roof.

Our yard is pretty minimalist, meaning we have no grass and not much ground cover (that is, the yard is mostly dirt). The pine trees that surround the yard keep the grass from flourishing. We used to put down mulch every year but discovered that was raising the level of the yard and contributing to the water flooding problems we now have. So, we've left the yard "as is" ever since.

As a result, this time of year, when the pine needles have covered the yard, this is the time it looks best. We are thinking of doing more with the yard after the front walk is rebuilt, but that's still TBD. I bet a comprehensive planting of ground cover would cost a bundle, so we'll probably have to take it slow on that front.

Below is the view out the kitchen window and a few other views of the needles and cones. You can see our yard statuary ... two armadillos and a lion.

Tuesday, October 6, 2009

Fast Maintenance

When my brother showed up this morning to continue work on the first repair project, he had a surprise. His son was with him! It was a huge help to him to have my nephew on the job because 4' X 8' masonite sheets are a bit hard for one person to install. And, the same is true of 10' or 12' redwood siding. Together, they worked like a well-oiled machine and got the repair virtually completed this afternoon. All that remains will be to re-stain the wood, which won't get done until after the front walk is replaced (that work is scheduled to start Saturday). Yoohoo!

(Unfortunately, I forgot to snap a picture of the entryway with all siding back in place. But, man, it looks good!)