In Memoriam

Dr. Edward "Uncle Ed" Force passed away this afternoon. He was 75 years old, and passed peacefully in his sleep, with family by his side.

Goodbye, Dad.

Time Passes

We've moved Dad to a nursing home close to the house because it became apparent that there was nothing else medicine could do for him. His liver is failing, and it's only a matter of time before it shuts down completely, taking the rest of his organs with it. He's eating remarkably well now that he has solid food in front of him, but the last week or so he's been sleeping more and more. For most of the hours I spend at his bedside I watch him sleep.

Work is picking up, so I have even less time to spend with Dad now. Double the volume of packages coming through our center means earlier start times, and while it's nice to start my commute in daylight and see a little extra in the paychecks, it's hard to deal with having fewer and fewer hours with my father as his time with us grows short. Still, I try to make the best of it, even though he recognizes me less and less frequently now. Part of him is at least still aware that I'm family, and I've been able to prevent a few falls and improper medications by being here, so I feel like I'm serving a purpose.

I'm hoping that, when he passes, the sudden uptick in activity for me (finding an additional job and moving back to Vermont) will help me deal with the sadness, on top of the normal Seasonal Affective symptoms. This winter is going to be rough, but keeping busy in a way that's useful and meaningful to me will help me get through it.

Realization

In the last week, being back at the acute care hospital and watching the doctors scrambling to address the end-stage liver disease that's come out of nowhere during the treatment for the fungal infection, my sister and I have come to the realization that Dad will probably never come home. How long he stays in his current state of incontinent delusion is completely up in the air, but it's unlikely that he'll ever be able to walk by himself or need anything less than 24-hour care.

Sis and I are trying to keep living our lives, to the extent we can while being in the hospital as much as Dad needs, so we're making time for leisure activities to keep ourselves sane. So if y'all see me at Rhinebeck and I'm looking depressed, you know why. I won't want to talk about it, but hugs are appreciated.

Running Totals

Since June 28th:

3 buildings in 2 states
8 rooms
2 PICC lines
4 Dobhoff tubes
3 belly taps
3 spinal taps
~12 modified barium swallow tests
5+ malfunctioning organs
dozens of doctors, nurses, and aides
dozens of blood tests

...and counting. We're at a rehab hospital in Massachusetts now, looking at a few weeks (at least) of treatment here before maybe going back to the rehab hospital we were in two weeks ago. There are still a lot of unknowns in Dad's case, so treatment progresses slowly, and every time we change facilities (which is always a joint docs-and-us decision to get him better care), there's a catching-up period of a couple days while we fill everybody in on the things that didn't make it into his chart. He's getting delusional again, too, which makes it even more important that sis and I are with him as much as possible.

Our lives are on hold. I can't look for full-time work and move northward because I have to be in the hospital. My sister can't go back to grad school because she has to be in the hospital. I'm putting about 1K miles on my car every week (yes, you read that correctly) commuting to the hospital and my part-time job in New Hampshire (which I won't quit because I need the health insurance). Projects are on hold, my business is on hold, I haven't seen most of my friends in ages, and I've only just managed to arrange my schedule in a way that allows me to get enough sleep and shower a few times a week... but it's a holding pattern, not a way to live. Stress and frustration are constant and heavy, and I'm pushing my coping skills to the max.

I wish I could say I was handling this with grace. I wish I could come up with something uplifting to say that would give someone out there a sense of hope. I'm clinging to little things that feel like gigantic victories because they're all I have -- things like finding the time to get groceries or Dad not retching after a meal. I feel guilty every time I take time off from the hospital, no matter how much I need that time to keep myself healthy.

All I can do is take it one day at a time, find whatever little silver linings I can, and hope for the best.

Second Verse, Same As The First

It's getting to be that when the doctors caring for Dad hear hoofbeats, they start looking for zebras instead of horses. One thing after another keeps impeding progress, and some of the issues are almost as rare as the one he came in with. He spent some time in rehab a few weeks ago, but then his liver stopped functioning properly, so we're back in the hospital again. With any luck, he'll be back to rehab by the end of this week, and then we cross our fingers, hoping nothing else will go wrong.

We've encountered all sorts of medical personnell in our nine-ish weeks here, some considerably better than others. When we occasionally have to call the not-so-good ones on something, we tend to get the same type of response from them: they quote their c.v. to us. This is intensely irritating, because it doesn't mean what they think it means. Telling me you have a nursing license just means you went to school and passed the tests. Dad did that with his driver's license ages ago... does that mean he should be behind the wheel? Absolutely not. The fact that you're leaning on your license instead of proving your knowledge and experience through your actions tells me you don't really understand the customer service aspect of your job (and, in the case of some of the staff we've encountered, there's some serious negligence and unprofessionalism that needs to be addressed).

The best nurses and doctors have been the ones who respect the fact that we, as caregivers, know more about this particular patient than the staff does, and allow us to voice concerns or provide assistance (ie. care for our father) without throwing rules and regulations in our way and making us feel like we don't know anything about caring for Dad.

I'm trying to do some knitting while in the hospital, and I have a handspun scarf coming along, but the time passes so much faster when I'm online that I tend to play with the computer more than the yarn. Being in the hospital, especially when the not-so-good staff is around, is a massive trigger for some of my less active psych issues, so I'm leaning on whichever coping skills work, without much thought about which would be the most productive outside of keeping me calm.

Oh, and while I'm getting y'all up to date on life stuff, I got engaged last month. *squee!!* Now I just have to wait for life to settle down a bit so I can start working on the dress. Any day now.

Good Times

After being pretty sure Dad had Lyme Disease, the doctors were very confused when the confirmation test came back negative just after I posted that last entry. It took a day or two, but they finally have a 100% accurate, triple-tested answer: cryptococcal menengitis. It's a soil-borne fungal infection in his brain/CSF. The fungus is extremely common, but not usually strong enough to attack someone who isn't immunocompromised (most people with this infection also have AIDS or another immunodeficiency). We think Dad picked it up over the winter while he was sorting through his mineral collection -- covered in dirt and kept in a humid cellar. He's such an unusual case that the doctors are going to write a paper about him.

The meds are working great, he's almost back to his old self, and he should be transferred to rehab next week, assuming the Infectious Disease doctors are satisfied with his progress. Then rehab will get him walking and writing like normal, and he ought to be home by the end of August.

While we're talking about good things, one of the perks of my job (loading trailers for UPS in New Hampshire) is that I get to load outgoing shipments from Harrisville Designs. Last night we got a bunch of big boxes from them going to another familiar name (which I will not reveal, because I don't know whether this shipment is secret or not), and I couldn't keep from scribbling a little note on one of the boxes. I get such a kick out of knowing a bit about both the shipper and the recipient of the packages I load!

Now if only I could make friends with some of the recipients of the boxes from North Country Smokehouse that make my trailer smell like delicious meat on warm nights... hmm.

One little tick, one big problem.

It's 2am on a Monday, and I'm in a dark hospital room, tapping away on my laptop. I just took my sister's place at our father's bedside so she can go home and get some sleep. Let me tell you how we got here.

Three months ago, Dad was hiking, writing a book, working on research projects, and sorting through his massive mineral collection to see what he could get rid of. He had a touch of high blood pressure, had been on an injected B12 supplement for years, was having memory lapses more-or-less normal for a 75-year-old, and was largely oblivious to the fact that he probably has Asperger's Syndrome, but was otherwise fairly healthy and active.

At the end of April, something happened. Overnight his gait changed, his word-finding ability took a nosedive, he had balance problems, his stamina plummeted, his memory issues became noticeably worse, and he had trouble keeping food down. It took us three days to convince him that he wasn't just tired, and that he should let us take him to the doctor. The doc, in the course of examining all the other symptoms, listened to his heart, discovered an irregularity, and since it was 5pm on a Friday and he wasn't a cardiologist, told us to take him to the emergency room.

Six hours in the ER, half a bag of saline, two all-purpose doctors, one neurologist, and one med student later, they told us he had neuropathy in his feet and was dehydrated, and that we should take him home and follow up with his regular doctor. Nothing about his heart, nothing about his mental symptoms, and it turned out when we went back to his regular doctor that the neurologist had diagnosed him with vascular dementia and not bothered to tell us.

(Thank you, Hartford Hospital, for being so eager to get rid of him. We'll never bother you again.)

We got referrals to a cardiologist, a neurologist, and a gastrointerologist, and his symptoms remained steady for the next month. We figured, with the sudden onset, that it was probably a stroke or something similar, so spending months following up with specialists seemed a suitable solution.

...until a few weeks ago.

Dad and my sister took their annual trip to Maine, and his symptoms suddenly got worse. He started falling getting out of the car and on stairs, his sense of time became muddled, he couldn't get through a sentence without pausing for minutes to find the right word, and we got scared. I took him grocery shopping when they got back from Maine and ended up having to get a motorized cart for him, and also having to drive it for him because his cognitive abilities and exective functions were suddenly not up to the task that had been easy enough for him two weeks prior.

We called the doctor, said we were taking him directly to the ER (at a different hospital), and expected to spend a couple of days figuring out what was wrong with him.

That was a week and a half ago.

Today, he can't walk without two people holding him. He can't hold himself in a sitting position. More often than not, he can't tell me what my name is. He can't swallow solid food. He thinks he's in a mental hospital. He sometimes thinks we "put [him] in here on purpose." He sleeps about 14 hours a day, in short bursts. He alternates between thinking the doctors are nice people and thinking they're prison wardens or actors in a television production where he's the only "real" person.

My father has Lyme Disease.

One bite from an infected tick did all of this. It turned him from a reasonably functional, very active senior into a delusional, bedridden, confused patient who often doesn't recognize his own family.

Fortunately, antibiotics should clear up most of the symptoms over the next month, but because it took two months from the onset of symptoms to the beginning of treatment, there's potential for some permanent loss of function, and we'll have no idea how much or in what areas until he finishes the course of treatment. He's going to stay in hospital until he's physically and mentally capable of being transferred to a rehab facility (anywhere from a few days to another week or two) where they'll get him walking again, and then he can come home.

So that, friends, is what has me sitting in a hospital room this morning, trying to figure out how to balance my duties and needs as a daughter, sister, caregiver, employee, business owner, friend, girlfriend, and human being without completely burning out. Any and all suggestions/well-wishes/stories welcome, and supportive/healing energy sent in our direction would be much appreciated.

And please, if you go outside, use a tick repellant and check yourself (and your kids/pets, if applicable) for ticks afterwards. Nobody should have to go through this.


***Update: After almost a week of assuming it was Lyme, the confirmation test just came back negative. So we're back to no diagnosis, confused doctors, and no treatment plan. Time to buy a weekly parking pass for the hospital garage.

Spring Update

Well, so much for a new post going up before Thanksgiving. Although, it's only May, and Thanksgiving isn't until November, so technically I am posting this before Thanksgiving... just not the one I meant to be posting before.

Anywho...

Things! And stuff! This is what my life has been full of lately. Knitting, spinning, traveling, starting a business, working, preparing for yet another move across state lines, bringing old sewing machines back from the dead... so I sort of have an excuse for not posting. Sort of.

Allow me to distract y'all with a few pictures from NH Sheep & Wool, where I spent a chunk of last weekend!


This sweet little Icelandic sheep was good enough to pose for a picture -- its pen-mate was more of a blur machine.


Shorn alpacas are such silly-looking creatures, but this one managed to bring a little dignity to the show. Check out that delicious mahogany color!

I was a bad girl and spent my lunch money on fiber (it was silk!), so I have something to work on while I'm vending or visiting at various renfaires and SCA events this summer. Totally worth it.

Meanwhile, life goes on. I have some merino/buffalo calling my name, so I'm going to pop in a movie and get spinning. Happy spring/summer, y'all!