Home

Yep. Made it home on August 15. Having exhausted treatment and rehab options, am now taking the hospice at home route. I am basically bed bound, as I cannot sit, stand or walk without assistance and i am very weak overall. not in a lot of pain though so that's good. No appetite so i'm down to around 130lbs. In hospice care there are plenty of people on call and who come around to visit to see how you're doing and make sure you're comfortable. I wrote extensively about hospice at home during Ms.'s mother's final illness in 2009, so those posts are still searchable. The program was newish then and was working out a lot of bugs. it isn't much different now except it seems much smoother and more coordinated. I've met everyone on my care team but one (social worker) and it is a functioning  team including doctor, nurse, home health aide, chaplain and behind the scenes schedulers, coordinators, pharmacists and so forth.

Being home is a big relief. It's been two months in some kind of care/rehab facility so getting home at last is a major treat, Getting used to it is taking time too. The cats. Ms. All these caregivers. The quiet. Every kind of happiness.

There is still a question over what to do about my shoulder. May require surgery but will start with heavy-duty muscle relaxant. At least that blasted cast is off, Yay. 

I have wondered about prognosis. No one has an answer but my own sense, based on the rate of deterioration these last two months is about six weeks/end of September. Maybe a bit longer or shorter. I won't be having tests so symptoms are all that will be tracking my condition, and right now symptoms are pretty stable. We'll see. 

Glad to be home,

"She looks like she's sleeping normally..."

A friend just called and apologized for not coming over to see Betty today -- she only had one visitor today, and that was probably enough in any case. My friend was pretty broken up about not coming over, though. He was remembering the loss of his parents, first his father and then his mother, and how much it took out of him and yet how much he gained from being there for them when he could be, staying with his father for his final days. He said he couldn't handle his emotions if he'd seen Betty again; it would have been too much. "Is she hanging on?" Yes, I said. Barely. "She looks like she's sleeping normally..."

But she is definitely on a journey.

As we talked on the phone, I could tell my friend was bawling his eyes out. Sometimes it's best just to let loose like that. I know when the priest came yesterday it was pretty constant tears around here, but Betty could hear us testifying about so many of the wonderful things she'd done for us and the special spiritual gifts she'd given us. And she smiled that astonishing smile of hers, and she let us know she liked hearing us say how good she was!

Well, she was and is. So there.

Betty's been on that journey several times before, but she's never quite reached her goal. She said she saw her son on that journey once, a son who'd been killed by a drunk driver while he was helping a motorist change a tire beside the road almost 40 years ago, and she said he told her, "Momma, it's not time yet, you have to go back, but I'll be here to meet you when it is the right time." She's seen her mother and her father, and she says she thinks she's seen her little brother who died when he was three years old. She's described her experiences there, "in that place", in great detail, and she's had no fear of going there again. No fear at all.

And we're very grateful for that.

When "T" was here this morning, Betty was still able to communicate, to share a few words, to smile, to listen to stories. And that was good. It was a fine morning.

Tomorrow? We can't know. But Betty has been letting us know that she's OK and she's going to be OK.

Bless her heart.

OT: Vigil

Last October, we started Hospice Care At Home for an elderly relative who suffered from congestive heart failure and desperately wanted out of the hospital where she'd been subjected to all manner of indignities and tortures in a successful effort to save her life. We had to take a really strong stand with her doctors, but after considerable.... persuasion.... she was released and brought to our home. She refused some of the home treatment her doctor recommended, including feeding through nasal tube to be followed with the insertion of a PEG in her stomach. So the doctor pulled the tube out of her and sent her on her way with a "No Code" notice to post on the refrigerator in case we needed to call Emergency Services. This was actually a kindness.

She was in Hospice Care for nine months, quite a bit longer than the professionals expected her to live. In fact, her doctor didn't expect her to live more than a few weeks after she got home if that long. She was expected to starve to death because she refused the NG tube and the PEG.

Oh, but she thrived instead. She gained strength and gained weight, she ate and drank normally, she was eager to get better. I was her primary care giver, but there was a nurse once or twice a week, and a home health aide came periodically to wash her and chat with her and cheer her up.

After nine months, the Hospice service decided she was doing well enough to discharge her, but because she had a persistent venous ulcer on one leg, they transfered her to Home Health to see if more aggressive treatment would help clear it up.

Well, it didn't. In fact, the wound got larger. Betty's spirits never lagged, but she was obviously going into decline, becoming weaker, less able to do for herself. But still not in a critical state.

I went to New Mexico for a week for my own R and R and I was informed while I was there that Betty had had a setback, a severe low blood pressure incident which alarmed the Home Health nurse no end. She and the doctor decided to cease certain medications immediately in the hope that her blood pressure would return to normal (well, normal for her).

It didn't. When I got back from New Mexico, I saw an alarming deterioration in Betty's condition. She was still in excellent spirits, but she was becoming weaker and weaker, and she was eating and drinking less and less. She had had bouts of severe nausea and diarrhea during the previous few months which were partially controlled but she was developing a real fear of eating and/or drinking too much.

Finally, a few days after I got back, she stopped eating altogether. She said she "couldn't". Food wouldn't go down. There was a blockage of some sort in her throat, she said, and it hurt to swallow. Shortly, she stopped drinking fluids except for a few sips of water now and then, sips that would frequently just come right back up.

The Home Health nurse was informed, and of course this caused even more alarm. Betty's blood pressure and pulse stayed low. The doctor was informed, and the recommendation was to put Betty back in Hospice pronto, or take her back to the hospital. I asked Betty if she wanted to go back to the hospital, and she said "Nooooo!" Well, that was that.

It actually took about a week to get her back into Hospice care, during which time she became weaker and weaker, but still her spirits remained strong and positive. The doctor came to visit a few days before Hospice was officially set up again, and she (the doctor) and Betty had a wonderful chat and time together (they go back a long way, decades.) As the doctor was leaving, she discussed with us what she felt was going on. She did not think Betty would live through the night, and she said she would be on call if we needed her help in any way.

Well, Betty did live through the night. She is quite a survivor. She has beat every expectation of her imminent demise for a very long time, confounding medical professionals right and left.

But we have few illusions at this point. We are on Vigil. The doctor has come to see her again, bringing her 10 year old son this time. Betty and doctor's son go back a long way too, and they spent some quality time reminiscing. Friends and relatives have come to sit and chat with Betty to cheer her and wish her godspeed.

Betty herself knows that these are most likely her final days or weeks. We of course can't know how long she has left to live, but she can't eat or drink, and she is showing more and more signs of cardiac failure. We make sure she's comfortable, pain free, and at ease, that she knows she is not alone, that she's with people who love her and that we'll stay with her.

In January December, I posted about our much beloved cat Mao who died on New Year's Eve. His illness and passing were almost identical to what Betty is experiencing now. He could not eat and at the end he could not drink, and he basically starved to death -- which is how the doctor expects Betty's life to end if her heart doesn't give out first. The parallels are eerie. And since Betty was discharged from Hospice, another cat -- who looks very much like Mao and has many of his behaviors and sensibilities but who is a girl cat -- has come to live with us and to sit with Betty and help keep watch over her, just as Mao did. It is the most amazing thing.

And I can almost not stop the tears....

OT: Burglar!

see more Lolcats and funny pictures

Yes. Well. If it isn't one thing, it's another.

I had to go out of town to do some work. On the way back, using a rental car, I had a flat tire on the highway. Before AAA got there, another local dude pulled up. His truck had scrawled on the back "Mobile Mechanic" and a phone number. Well this seemed like the kind of person who'd be sent by one of the other services, so I asked him, brightly, "Were you sent by AAA?"

"Oh no," he says, "I work independently. I saw you were broken down, so I thought I'd see if you need any help."

I told him AAA was on the way and thanked him. When the guy from AAA came he said that there are so many breakdowns on that stretch of highway, there's plenty of work for everyone.

Still had a hundred miles to go before I got home. On that little bitty spare tire. Oh well. Made it. Things seemed OK. Got ready to take the car back, a caravan, me and another person to drive me back. Relative in hospice care at home asleep. Process may take forty-five minutes or so.

When we get back from the airport, car has a flat in the driveway. Oh noes! Well, I'll change this one. Meanwhile some odd stuff is going on in the house. "Has somebody been here?" Asking relative, she says that somebody was banging on both outside doors, for quite a while, but she can't see, and she can't get up, either.

We looked around. One of my laptops was gone (the one that I'd taken to work earlier) and some jewelry had been taken.

Oh. Dear.

I had to report the stolen laptop to my employer. And to the police. The jewelry was mostly of sentimental value (old watches, etc.). Police came. Reports, fingerprint dusting, all the usual.

It's been quite a long while since we've been victims of burglary, and just as then, it is the sense of being violated in your own space that's so creepy about it. We felt very lucky that my relative was not harmed, she wasn't even aware, she said, that anyone came in the house. But it does put us in a very curious situation.

How to juggle it will be the next challenge.

OT: Hospice

Had to call Emergency Services yesterday for the first time since starting the Hospice Care at Home program for the elder relation being cared for here. She... expired... on us. But then, after the incident was over, she said, "They sent me back."

When the EMTs got here, maybe three minutes after calling and perhaps ten minutes after she "expired", she had somewhat revived, was breathing and semi-conscious, and they did their tests and exams, pronouncing her "Eh, OK," and -- after some discussion about DNRs and whatnot -- decision was made to keep her here, not to transport her to the hospital (all her vitals were good enough, and there wasn't anything they could do for her at the hospital that we couldn't do here.)

She came to after they left, and her first remark was: "I don't want to go anywhere!" I said, "Oh no, they're gone now. They're not going to take you anywhere. You're home. You're going to be all right."

That's when she said, "They sent me back." She said she didn't remember anything of what happened, wondered if she fell down, though. I said, "No, no. You just collapsed. Passed out. You didn't fall. You were unconscious."

Well... she's been having bowel trouble, persistent diarrhea that we treat with medication. The medication works fast but it's temporary, and what's been happening is that she will have a normal bowel movement followed by diarrhea. In the past, this has made her cranky, but apart from the clean-up, it hasn't been a big deal.

This time was different. She had a normal bowel movement, but she was complaining about head aches and dizziness, and quite suddenly she said, "Oh, it's coming," and she practically exploded with diarrhea. As she was sitting on the commode, she started to drool and fall over and become less and less responsive. I sat her on the bed. She was unconscious but breathing with difficulty. Then those... erm... rattles. Then she stopped breathing. Her pulse stopped. She started turning gray. She was completely unresponsive. This went on for maybe a minute or two. Time to call. While I was on the phone, she began to revive, haltingly, but come back she did. And then she had another episode of diarrhea, poor thing.

According to the EMTs, she'd probably pinched the vaugus nerve at some point while she was having a bowel movement and that caused her to lose consciousness. Fairly common in old people. It had never happened to her before, but there's always a first time. There was no sign that she'd had a heart attack, but it was possible. They'd have to check that at the hospital. No obvious sign that she'd died.

But I've seen people die, and that's what I saw her do. She herself thinks that's what happened. But... "They sent me back."

And though she is very weak right now, she said, "They sent me back, so I guess that means I'm supposed to live to 100, eh, like our neighbor did. Good!"

She'll be 89 next month. I'd say she's good for at least a few more years.

Update -- Hospice Care At Home

Home Care of the Sick By Amy Elizabeth Pope, American School of Home Economics, American School of Home Economics

Eventually I get around to things.

As you may know, I've been taking care of an elderly relative, in a hospice situation at home. Basically, I'm on 16 hour daily shifts, handling pretty much everything for an old and frail woman suffering from the complications of congestive heart failure. She was hospitalized for two weeks in October, treated to extended episodes of what could only be called torture, which ultimately we decided was "unproductive."

She was sent home, after an extraordinary struggle with doctors who wanted to keep her in their care for another three to five weeks or longer, feeding her through various tubes and shunts and so forth and medicating her up so much she wouldn't know what was going on. They figured she was not long for this world, and at least at the hospital she'd have access to prompt care if something should go wrong -- and something did go wrong the night before she was discharged.

She had a "cardiac incident" which was only controlled through massive intervention.

For a week, she'd been saying she wanted to go home, did not want all the invasive and potentially life-threatening and counter-productive treatment. She wanted to be left alone to sleep at night, and she wanted, most of all to eat and drink like a normal person.

And the doctors said "No."

Finally, when I had a rather heated heart to heart talk with her attending physician, with many references to keeping her body alive while killing her soul, and pleas to refrain from subjecting her to more pain for no gain (her condition had deteriorated dramatically since the angiogram and insertion of stents in her cardiac arteries), and with the intervention of her primary physician, we managed to get an actual discharge from the hospital, though at that time she was weak as a newborn, could not stand, could not walk, could not even lift her head.

She's been getting -- slowly -- better ever since.

She can stand, she can walk with help, she eats and she drinks like a normal person, although she can't feed herself and needs help, she no longer receives physical therapy (she hardly used the service anyway), she gets a once or twice a week visit from a hospice nurse.

Her initial goal was to get rid of the tube feeding. That was accomplished the day after her discharge.

Then she wanted to stand and to walk; it took several weeks of exercises and practice, but she has been getting up on her feet and ambulating with her walker and with help for a couple of weeks. She wants to get to the point where she can actually walk to the bathroom on her own, but that may be in the mid-term future.

She has a venous ulcer on her leg; her next goal is to heal it. The wound has been difficult. She's had a number of visiting hospice nurses who have been flummoxed by it, and a couple of them had no idea what to do and subjected her to intense agony as they fussed with it this way and that, until we had to tell the hospice service to send no more untrained and unqualified nurses to make her condition worse. Either she gets the same nurse who knows what to do and can do it relatively painlessly (with the help of a minor amount of morphine), or we terminate the service. The issue was consistency of care, and this -- generally very highly regarded -- hospice service made no effort at consistency at all until we said, "No more of this shit," and things got a lot better, fast.

I feel exhausted by the long hours and rewarded by signs of progress. Hospice care assumes the patient's condition is terminal and that it's all a matter of time, making the patient comfortable, and prayer (it's a Catholic hospice service, after all). The patient is not expected to "get better," not in any global sense, and we were informed over and over that there would be no effort at "cure."

So her progress, though slow and with setbacks, comes as something of a surprise to the service providers. There is no telling how much longer she'll live, but she's already surpassed expectations by weeks. That may not seem like much, but given where we started, it's great.

We got the hospital bill the other day. $189,000 and then some (we've been getting periodic other bills, some of which seem odd or possibly even fraudulent, but who can say? Hospital billing is all completely opaque.) Actual amount billed to the patient, however, has been less than $2,000; Medicare takes care of most of the hospital bill and is taking care of the hospice service.

Tell me again why Medicare isn't expanded to cover everyone?

There have been many difficulties and missteps through these last few months; it has not been easy for anyone. And we don't expect it to get easier.

We just do what we can.