CT with the family

Saturday DH flew in with the kids.  They came into Logan, and I decided the easiest way for us to connect was for me to take the bus from the Cape directly to the airport.  Various siblings offered to drive me, but that would've involved them driving to pick me up & then up to the airport, which just seemed like too much to me.

It all would've worked out fine if the bus hadn't died at South Station.  They said another bus would be along in in 5 minutes, but I know what those "5 minutes" become, so I got on the Silver Line to the airport -- which involved about a 10-minute walk through the maze that is South Station to get to the bus.  The family's flight arrived about a half-hour early, so they were already at the airport.  Then there was a fair amount of back and forth over where to connect, but I finally met them at the rental car depot, and from there we dealt with the maze that is Logan airport's central parking and finally, finally located the chapel where we attended a really lovely Mass.

And then we drove to Connecticut.  We stopped for dinner and by the time we finished it was raining, and DH drove the whole miserable way, for which I was very grateful.

Since then the weather has been gorgeous.  Sunday was saw a local production of Hair, and my poor mother-in-law is still scandalized by the nudity and I think somewhat perplexed as to why we are not. The kids were unfazed.  At this point in their young lives, they've seen it all, and the nudity wasn't aggressive or prolonged, although it was quite complete, as the entire cast strips down.  It was a great production, with phenomenal singing.  I enjoyed it and the opportunity it gave us to talk with the kids about the whole hippie lifestyle, which is not appealing to them.  DD is somewhat drawn to the hippie aesthetic -- the look, not the philosophy -- as am I, but you can borrow from the style without having to buy in to the philosophy.  I do it all the time.

Yesterday we hiked Talcott Mountain, as we do every year.  But this year DD and I took the blue trail down instead of the yellow trail, and it was a much more interesting and challenging hike.  The yellow trail is basically a walk up (and down) a long, sometimes steep hill.  The blue trail puts you into the woods and over the huge rocks.  Both are gorgeous but the blue trail had the advantage of being empty except for us.  The yellow trail had the advantage of leading us to a tiny bright orange salamander, which made my day -- this is the first time I've seen one in the wild anywhere in New England, something I had thought I would never do.

Today we had an exceptional tour of the Mark Twain house, led by a friend of my mother-in-law.  He was entertaining and so knowledgeable, and he gave us peaks at several rooms that aren't usually on the tour.  We were very late for our lunch reservation so we'll have to go back so I can get this:

This cat was the starting point for the bedtime stories Clemens told his daughters, and I would love to get a framed print of it.    Lunch was at The Pond House, and while the service was somewhat desultory and the soda completely flat, the food was outstanding and made up for whatever deficiencies came before it.  I had the grilled and chilled peach salad which was perfectly balanced and delicious.

After lunch we wandered around the gardens of Elizabeth Park, enjoying the absolutely perfect weather.

Meanwhile, back in Massachusetts, Mom is in rehab and on a nebulizer because she's having trouble breathing now and then.  She is compliant during her physical therapy sessions but then gets back into bed immediately and stays there for the rest of the day.  She doesn't want to do anything.  I don't think she has the energy to be bored. She tells me she's not having any pain, she just feels "kind of numb."  It's very sad.  She won't even go out in the wheelchair to see the beautiful flowers they have on the grounds.

panorama of Elizabeth Park's annual garden

next step, baby steps

So Mom went into rehab Monday afternoon.  My initial impression was "This place is so depressing!"

True, but so limited.  Mom shares a room with a pleasant woman who was hit by an ambulance(!), but she's sharing a room!  I said to myself.

She's in the bed by the door, with just enough space between the bed and the wall for a chair.  There's a television mounted on the wall up near the ceiling, above an expanse of blank white wall, on which I taped up big color prints of photos of her birthday flowers, because staring at a blank wall is depressing, I said. Out loud.  And she really misses her flowers, because she does.

Everyone -- every single person -- has been kind and professional. She has physical therapy and occupational therapy and gets washed and dressed and fed.  She is cared for much better than she allowed us to care for her at home.

That's still surprising me: what she allows.  At the hospital Mom became confused and disoriented, sometimes thinking she was at home to the point of arguing about it. (hospital delirium) The delirium has continued at rehab, but she is still on the steroids and will be until July 3.  We are all hoping that she recovers once she's fully off the steroids, but I'm worried that she won't.

Still, she has walked more in the past 2 days than she had in the previous week, but she has lost so much function through inactivity.  She developed pressure blisters on her heels and now they've popped, and with her bad circulation they represent a huge infection risk.  Plus lying in bed for most of the day (everything leaves her exhausted) puts her at risk for pneumonia.

Her nephrologist sent along her lab results, noting that her kidney function is at 12%.  Dialysis is recommended when it hits 15%, but she absolutely will not consider it.  It might make her feel better, but with the arthritis, diabetes, kidney disease, neuropathy, spinal stenosis and degenerative disc disease, it's doubtful whether anything really can make her feel better at this point.

Mom's compliance at this point is creepy, knowing how strongly she felt about doing any of this before she went to the hospital.  She's playing - being - the good girl and doing a fine job of at least going through the motions.  Her level of fitness is so low that even going through the motions will improve her capabilities, at least at first.

The staff at the rehab center have a policy of 2 weeks of observations before recommending a care plan to the family, so they can really see how the patient is responding to nursing and therapy.  By that point Mom will be off the steroids, so we'll have a much better idea of what she's capable of in the longer term.  In the meantime, we just have to take it day by day.

same universe, different pocket

Thursday we found out that the source of Mom's pain is not her PAD. The vascular surgeon ruled it out following a leg study which showed her ankle pulses are nearly normal. Why he didn't refer us to the emergency room for help at that point is beyond me, but he did say he would put a call in to Mom's primary care doctor.  My brother left Thursday night to get back to his family.

Friday morning, hearing nothing from Mom's doctor, I realized that I could not continue to safely care for her myself.  That started a round of discussions where we went back and forth between the ideas of hospital or hospice.  She decided, after much pressure from a couple of my siblings, to come to the hospital.

I had researched her leg pain and symptoms - knees buckling when she walked - and am pretty convinced it's femoral neuropathy.  The only question is, what was causing the nerve impingement?  She has spinal stenosis and type II diabetes.  It could be a bone spur, it could be a blood clot, it could be diabetic neuropathy (which we know she has already, in her legs and feet.)  I finally got a call from the doctor who advised me to call 911 to have an ambulance bring her to the hospital, and life has been even more strange ever since.

I'm still wanting only 2 things for my mother: good care and as little suffering as possible.  Friday was horrible as she was subjected to six hours of testing.  They gave her large doses of dilaudid but that did not touch her pain, which was nerve-related.  Multiple x-rays, ultrasound, and CT scan - they had actually ordered an MRI because her pacemaker was not in their records, even though I had told them about it when we came in.

People have been super for the most part here, but the troubling thing is, they still don't now what's causing the pain.  They put her on IV steroids Friday night and for the last two days she has looked the best I've seen her.  Being pain-free can do that for a person -- and since her kidneys are so compromised, she basically can't take any pain meds except Tylenol, which she says doesn't do anything.  So she has been on zero pain medication for months, and I'm sure the relief from pain was wonderful for her.

They ruled out fractures and blood clots, but can't see any other nerve impingement.  They're happy that the steroid worked, but today they transitioned her off the IV steroid to an oral steroid and she was in so much pain this morning that she had to double up on her oxycodone, and even then it took 45 minutes for it to kick in so she wasn't wincing, gasping, or shrieking every 30 seconds.

The physical therapist is supposed to see her today and evaluate her.  I am sure they will recommend rehab and a strengthening program, and I'm equally sure that it will just be more torture for her.  The hospital atmosphere here is very nurturing, but in the rehab they expect you to do for yourself.  She will not be comfortable, and she will not be home.  And when she gets home, she will just go back to sitting all day and very quickly lose any gains she may make.

On Saturday I was with her while she was eating her dinner and I noticed her breathing had become very labored.  I called the nurse who checked her vitals, and Mom's blood pressure was so elevated they put a nitroglycerin patch on her chest.  She had been on an IV, and they had pushed so much fluid she was heading into congestive heart failure.  She has been off the IV ever since, but then we run back into the issue of dehydration.

Mom's other problem was that she hadn't moved her bowels since last Saturday, but she was finally able to evacuate everything that had accumulated.  Many of us were thinking that mass could have been adding to the nerve compression, but that was on Saturday and today's pain says otherwise.

At least, because she's spending most of the day with her legs up, the swelling in them has basically disappeared.  The skin still shows the signs of PAD and her toe is still necrotic, but the legs are not swollen, hard, and hot the way they used to be.  It surprises me that Mom is still having so much pain because they look so much better, but the pain is obviously unrelated to the swelling.

Looking back on all this I don't know why I didn't just take Mom to emergency on Monday when she first couldn't walk.  It would've made sense, but at the time I just figured it was a progression of her PAD.  When we learned it wasn't, that pushed me to call for help.  In retrospect, I should've called for help immediately, but then there was the fact that Mom didn't want me to.   I feel like this whole process has been horribly accomplished so far, and we are not even close to being done.

Physical therapy is here now evaluating her fitness, and it's clear that her mobility and strength are very compromised.  And now the nurse practitioner has come in to say they are moving Mom to rehab this afternoon!  All of this is happening very quickly.

in the pocket universe

So, I'm at Mom's, but everything is completely weird.  I left the kids home and flew in last week on Monday, and Mom was slow but still getting around.  Her 88th birthday was Saturday, but she insisted she wasn't going to have a party.  So we said, that's OK, we'll have the party for you.

My oldest sister and youngest brother were here on Saturday with their respective others, but the big to-do was Sunday, when my oldest brother and all his children and their spouses and children came down, along with my other local brother and his family, and my other sister and her two daughters and their children.  Babies everywhere!

It was a really lovely day, very low stress.  I cleaned the house and the front yard up a bit, and made sure the grill's gas tank wasn't empty, and I baked mini cheesecakes and brownies, totally low stress prep.   Everyone else coordinated and brought food, and one nephew cheerfully manned the grill.  And when it was over, they packed up all their leftovers, because they have huge families and here it's just Mom and me, and Mom doesn't each much, and I don't eat wheat (which leaves out a surprising number of food items.)

And all that was lovely, and Mom was doing OK.   She has peripheral arterial disease and her legs are swollen.  She sometimes needed help getting up, but she could still get around using her walker.

All that changed on Monday morning, when Mom could barely make it from her bedroom to the dining room table.  I listened as she came so slowly down the hall, and I knew there was something wrong.  That short trip is the last time she walked.

The pain in her leg is much, much worse.  So much worse that she doesn't argue about taking her pain medication anymore.  So much worse that she pretty much doesn't argue about anything anymore - including the incontinence products she's using now, which are thankfully much more effective than those she was using.  But bathroom trips were exhausting until my sister told me we had a commode downstairs, which is a Godsend.

I don't know how I handled Monday, and on Tuesday when my brother called to tell me he couldn't make it, I described in detail this situation and the fact that I am so completely out of my depth here. So, God bless him, he came anyway, and it's so good to have another pair of eyes (and especially arms) here to help me figure this out.  There is so point in thinking she's going to get better, because she's not.  Thank God for my brother, though, since he figured out how we could get Mom to her blood test this afternoon -- wheelchair and stairs are a tough combination, but between the two of us, Mom didn't even get bumped a little.

I'm trying to keep Mom comfortable, well fed, and pain free, but I do feel like I could do everything better if I had a clue how.  I'm not sleeping very well.  My whole life feels wrong and weird, except now that the not-walking, extreme pain situation is ending Day 3, I'm actually kind of used to it, but I don't want to be.   My brain keeps rejecting what's happening while at the same time I'm trying to do what she needs me to do.

... Stupidly, I'm still trying to accomplish all the tasks I laid out for myself for these 3 weeks, before I even left home and when I had no idea I'd become a caretaker rather than a companion.  I need to plan my school project, and I have actually started it.  Then there's the landscape overhaul:  weed and mulch the front beds, clean out the side yard (jungle), clean up the back perimeter.  Some of that may have to wait until after the tree guys come, which should be before I had off to CT.  I'm working on house-clearing projects, too, and managed to clean out both freezers, so no more freezer burnt anything.  Huzzah! We're also getting windows replaced and the garage door in the summer kitchen removed and replaced with a sliding glass door, and having the window guy here necessitate straightening up more than I really wanted to, but I did it anyway.  I'm just bummed I won't be able to see that when it goes in, because everything is being custom built and it won't be installed until August.

Last but not least, I'm counting a victory against the scourge of spiders that has been plaguing us for years: Miss Muffet's Revenge, a spider killer and repellent.  Friday I vacuumed walls and ceilings, on spider patrol.  I sprayed all around the outside of the house and then the downstairs on Saturday.  Usually, we could vacuum on Friday and spiders would be back in residence, at least in the bathrooms, by Saturday evening, but so far the bathrooms (along with the rest of the house!) are spider-free and that's amazing.  It's supposed to last up to 12 months indoors. Oh, if only that were true! Here's hoping for a relatively spider-less summer.