home, finally

Crazy week -- I had my "teachers on the estuary" class at Waquoit Bay, and it was awesome.  But that meant that I was in class from 9am - 5pm Monday-Wednesday (well, Monday had a 10am start), and until 3pm Thursday.  It was awesome that the class was just up at the research reserve, which is literally a 3 minute drive from Mom's house, but being occupied for 8 hours each day meant that my time to visit Mom was limited to the evenings.

So after school I'd visit with her for a couple of hours, and then have a late dinner with the kids.  We have necessarily been doing a lot of eating out: British Beer Company at Falmouth Heights is great for dinner, because we can park in the Heights Beach parking lot.  On Tuesday, Bastille Day, we had a fabulous dinner at Bleu in Mashpee.  Wednesday the kids settled for pizza from Pizza 1 Subs 2, but that's not exactly settling.  

Wednesday, I called the nursing center to speak to the nurse practitioner to hear how Mom's re-evaluation went, and learned that they were set to discharge her on Thursday!  When we met with the hospice representative, the date was set -- that was not clear to me, and necessitated a flurry of phone calls and furniture moving and what-not, but I managed to get everything straightened out.   Very late that night my brother and his family arrived from Louisiana, and that helped because they were here to receive delivery of the hospital bed and wheel chair on Thursday morning.  

One of my Boston-based brothers came down with his wife Thursday morning and oversaw the discharge process, which was awesome because I got to attend my last day of class (only a half-hour late because of phone calls and logistics). The hospice sent the intake nurse to look over Mom and treat anything (like bandaging her heel), and they sent her home with her current medications.  Today her nurse manager will be by and we will discuss which medications to continue and which to drop.  Yesterday her blood pressure was the rather alarming 110/104, even on 2 different blood pressure medications.  Now I understand her headaches!

Mom enjoyed eating a big cream-filled donut from Dunkin' when she first got home, and later she enjoyed having crab rangoon from her favorite Chinese restaurant.  She had more calories yesterday than she had had in the previous three days, and she was obviously happy to be home.  She stayed in her wheelchair until about 7:45pm when she was falling asleep, so we moved her into the bed, and she has been sleeping ever since - 12 hours now, with a bit of wakefulness about 11pm when I gave her her night medication.  The hospice sent a variable-pressure bed which inflates and deflates to help prevent pressure sores.

I'm a bit at a loss as to how we're going to manage -- my brother helped me get Mom onto the commode, and then to transfer her from the wheelchair to the bed.  She has some strength now but that will fail quickly.  She hasn't attempted walking since Monday, and her knees would not hold.  Toileting if only one person is here to help will not work, and I do not know how some of my siblings will feel about changing her incontinence briefs.  The hospice intake nurse said home health aides are scheduled for 3 times a week for an hour each time, but that will be for bathing.  I'm not sure how often skilled nursing will be assigned; we'll find out today when her nurse manager comes by. 

In the meantime, the kids are very much enjoying being together again, and last night we all played cards together for hours.  Mom is sleeping in the living room but did not mind the commotion, most likely because she couldn't hear it. Yesterday, she seemed better, but I think that was the psychological effect of coming home and having everyone here.  We'll have to take it day by day.   

roller coaster

Mom was dreadfully sick over the weekend, with near continuous nausea and various pains.  She ate about 10 bites of food total over Saturday and Sunday.  Yesterday was a little better, and today better still - she ate about half a cup of cottage cheese and some fruit cocktail at supper, and it was the most I'd seen her eat in days.  But she couldn't walk yesterday, her knees kept giving out, and she says they didn't ask her to walk in p.t. today.  It's hard to know whether or not to trust her memory -- sometimes she's spot on, other times she's mixing up the days or just forgetting things entirely.  Her somewhat confused state has become the new normal and is not as disturbing to me now, but I do miss my old sharp Mom.

Her refrain, especially when she's feeling, as she says, "Lousy," is "I can't understand how I ended up in this place," so I remind her about not being able to walk and going to the hospital.  But I think she remembers the talk we had before she went to the hospital, and this whole month in rehab was really not supposed to happen.  But here we are, and at least these last couple of days have seemed better -- or at least she has put on a good front when I've visited in the evenings.

I suspect she is rallying because my brother is coming in from LA with his family late Wednesday.  I can't imagine that this upward trend is going to last.

I'm up very late because I took about a 2 hour nap while the kids watched Jaws after a spectacular Bastille Day dinner at Bleu in Mashpee.  So I'm not that tired, and I'm stressed, and I don't want to go to bed.

This wouldn't be a problem except that I have class in the morning at 9AM.  My first two days have been wonderful.  One of the best things is getting to spend time with other science teachers.  Professional development sessions during the school year are just too short, and my NAU classes are great but free discussion time is necessarily limited.  It's awesome spending time with so many other people with similar interests and issues.

I can't even list all the things I've learned about -- even how to canoe, even though I did not paddle, I would like to try if we go out again.  I find myself afraid of physical challenges much more than I used to be, and I don't know if it's because I'm chronically sleep-deprived, stressed because of Mom, or just getting older so I can't mask the fears I've always felt as well as I could, but I don't like it!

Anyway, I've got more sun in the past 2 days than I have in years.  At this rate I'll be going back to AZ with an actual tan, along with a stack of work that I have no idea when I'm going to be able to clear.  I'm stalled on my science project work but I'm hoping to get some of it done next week, because the week after -- it's back to AZ, and back to school!

on the way

The rest of our time in Connecticut passed as wonderfully as those first few days.  We went to Mystic - 10 years after our first trip there!  And we saw the patriotic concert and fireworks at Talcott Mountain, with over 10,000 other people enjoying the spectacular weather.  Saturday we lazed about most of the day, went to Mass, and headed to the Cape in the early evening.

That turned out to be a fantastic choice, since we had zero traffic, and crossing the Bourne Bridge we saw a string of fireworks displays strung out along the coast.

Sunday I took the family to visit Mom at the rehab, and they played a little concert for her on the grand piano in the dining room. My sister came for her usual Sunday visit, too.  Mom loved it.  She seemed well, and enjoyed the time we sat outside with her, admiring the flowers.

Monday was not as good a day.  She told me she felt like crying all the time, and when I asked her why, she said it was because she felt sick to her stomach. Her head aches, too.  The nurse practitioner was in, and said she was starting an antibiotic for a UTI.  I asked for medicine for the nausea, and they wrote her a new prescription.

Today was Mom's care meeting.  My two sisters came down, and the boys called in on a conference call.  Mom has made some progress but she is approaching the limit imposed by her many medical conditions.  The clear outcome of the meeting is that while Mom can recognize that she needs help, she cannot identify what to do to get it. She is not capable of making decisions for herself.

So all of us, her seven children, have to decide for her.  Her GFR (kidney function) is down to 10.  Her nausea and lack of appetite are consistent with kidney failure, and the anti-nausea meds don't work consistently.  Off the steroids, her femoral nerve pain has returned.

The next step is to have a meeting with a provider of hospice services to determine what must be done, and I'll request that tomorrow.  

I went to see Mom again this evening, and she was shivering in her bed.  I helped her into her fleece jacket and that seemed to help, and then I propped her leg up on a pillow.  She was cozy and as comfortable as I could make her, but she had a very difficult day.  I still just want her to be comfortable, pain-free, and well cared for.  We're getting there.