Compassionate Care Hospice, Maybe?

This week we met with two RNs from CC Hospice. I had talked with them in advance about doing blood draws, and they said they would, although their objective would be to treat the symptoms, not the numbers.

I don't really understand the difference. Jim low sodium and high ammonia and high billirubin and high kidney values are all REASONS for his diminished mental status. So which track one takes with treating the symptoms depends on the numbers. But what do I know? I'm an accountant.

One of the nurses spoke pretty knowingly about liver failure and how the final days play out. I don't think Jim or I wanted to hear that, but we probably needed to.

Jim, of course, refused and still refuses to sign up with Hospice. I called the intake counselor back, and she said it was clear that Jim didn't have the capacity and that I could sign him in, especially given I have power of attorney. I really don't want to do it that way; I want him to be a full partner in the decision, but I will do what I need to.

Got another bill for Patrick's time. $1K for two weeks, 7 visits. We really need it, but I do have qualms about affording it. We have now used up the $1.5K grant the cancer center promised me for this. I need to work on looking at Jim's retirement assets, and how fast this level would spend those down.

I spoke to my major contractor about work this upcoming busy season. I update accounting publications for a national group. The publications director agreed to move 3 of the 5 more complicated publication to another author and leave the 2 easier ones for me. I agreed to hire day care for Jim 3 days a week. That would be my cost, to allow me to work. I also have a major book in process that the publications manager agreed could be put on hold until after these 2 products.

So I will have some income in 2007.

I am feeling OK, just sleeping alot with Jim. I think it's depression; it's so hard to watch him go through this.

We have a new night care person in tonight--Silas. He remembers us from when Jim was in Shipley Manor. Silas even remembers Jim's room number. We don't remember Silas, but he seems like a very nice man. Like Patrick, he is from Kenya. We'll see whether he can fold a fitted sheet! I already know he can wash the kitchen floor.

Now that it's December 31, I can say happy anniversary to my diabetic cat Maxwell. He has been off insulin/diet controlled for one year now. I wish there was the same "cure" possible for his kidney failure. The poor thing is getting so skinny from that wasting disease.

I am still struggling with trying to get Max's diabetic littermate Ennis regulated on Levemir.

Happy New Year to all!!

My Christmas Thanks

Thanksgiving is the usual day for thanks, but my favorite holiday is Christmas and that is when I reflect on what I am thankful for.

I am thankful that Jim is with me. His dementia with his end-stage liver disease is severe, but even though he is not lucid enough to know it is Christmas, he knows me and loves me. I pray he can somehow recover at least some of his abilities, and for Christmas, I ask all my friends to say a short prayer/wish for the same thing.

I am thankful for Max, Ennis, and Lily. I am thankful that Max is in remission, and even though he is failing with his CRF, he is still just happy to be here. I am thankful that Ennis is starting to respond well to Levemir, and that Lily is finally putting some weight back on.

I am thankful that even though I lost Bailey this year, he was an incredibly gentle soul who will have a place in my heart forever.

I am thankful for the handful of local friends who have been helping me with Jim. They stay with him to make sure he is safe while I do necessary chores outside of the house. Of them all, the best is Liza, who calls or comes over almost every day to check us out. If I had a daughter, I would want her to be Liza.

I am thankful that I am now calling myself a breast cancer survivor. I have my final surgery in February, and hope to be completely recovered from all the treatments by mid-2007. It would be nice to get full feeling back in my fingers and toes.

I am thankful for the dozens and dozens of friends I have on the FDMB. People who help me find information to deal with some of my daily challenges, and those who support me with hugs and PMs of encouragement. I especially appreciate those who have lost beloved furries recently who take the time and effort to reach out to me. I don't want to name names, because I would certainly leave someone important out. But you know who you are, and please take this as a very personal and heartful thank you.

I am thankful for my brother Les and his wife Donna in TX who are my rocks. They are ready to come help me whenever I have the need. I am thankful for Annie from Harrisburg who came to help me during my 2nd mastectomy and Betty from FL who came to help me while Jim was "dying" in ICU. I can't even get close to the emotions I feel about their help and concern.

I am thankful for Patrick, the young man from a private-duty organization who stays with Jim 4 nights a week. Jim and Patrick have formed a special bond, and I can't imagine going through this without Patrick.

You all are my gifts, and I envision you all wearing brightly colored bows on my mantle this morning. Thank you so very very much!

Vitas Hospice a Bust

I am getting to the end of the Home Health Care rope for Jim. The PT guy has pulled out, and the nurse says she will pull out in no more than 2 weeks.

Oh, my, we need blood draws from the PICC line to check his values to adjust medicines. We need someone who can take a blood pressure reading, because my machines can register him.

I had a meeting with Vitas Hospice, and they are not for us. Sister Catherine said that they would not do blood draws. “What’s the point? We aren’t going to intervene with medication changes to delay his inevitable decline.” (What’s the point? To give him a functional mind for as long as we can.) Jim was sleeping at the time, and the Sister said he was comfortable with his passing, or he would want to go into the hospital. She said the problem is mine; that I am the one hanging on and fighting the inevitable and perhaps causing him stress and discomfort by doing so. She implied that I was in denial that he had given up.

Maybe she was right. I don’t think so. I believe Jim wants to fight, with what will and energy he has, and refusing a hospital stay has nothing to do with that.

Jim and I talked later about what the Sister said, and it seems he understood and agreed that he wants to live, but he wants to live here and not a hospital or long-term care facility, even if we have to go 100% private-duty care. We talked about maybe the need to sell his condo to finance that. He agreed that the value of his fully-paid condo was in his “budget plans” as financing if he needed long-term care.

God, I hate to even think about selling his condo because he loves his home; I’ve never known him happier than there. He was proud that it was furnished and decorated like a “real home.” He was so independent and could do whatever he wanted whenever he wanted. He could sit in his chair for hours in the morning reading novels, and watch Phillies baseball on TV almost every night during the season.

I spoke to our lawyer yesterday about changing my will to set up a trust to take care of Jim on a private-duty basis. That really touched Jim, and he started crying. I told him I was committed to keeping him in a private home and as happy as he could be. On the hepatitis chat Board I joined, there are several men in end stage liver disease (ESLD), some waiting for transplants, some not, who are surviving years with this disease.

Sister Catherine said the kind thing about ESLD is that those who pass from it usually do so in their sleep. They just don’t wake up. Now I am watchful whenever Jim falls asleep. He just did that a few minutes ago on the couch with his cereal bowl in his hands.

I don’t know how to wrap my head around this. I don’t know for sure which road Jim would want me to take for him, except that yesterday he said he wants to stay with me and love me for a very long time. I told him that he always had promised me he would live to 84, as both of his parents had. He just hugged me and we cried.

Some have suggested I have conversations with other hospices. Their philosophies on what “end of life care” means may differ.

Someday, in this morass of a mess that I call an office, I will find the copy of our wedding service and vows and post it. It was very powerful. We got married at sunrise on Virginia Beach, the place where we met and, over time, became part of one another.

I want Jim back.

The PICC Line Stays

Jim’s GI DR called last night and insisted the PICC line be removed. He said there was too much potential for infection. He asked who wanted it put in and why. I gave him Jim’s GP’s number. The GI DR also wants to see Jim the first week or two in January.

I talked to Jim’s GP this morning. He said he had an enlightening conversation with the GI DR and that I need to be vigilant about restricting Jim’s fluids. He said he learned that fluid restriction is the key to managing Jim’s sodium; not manipulating the meds. He said the GI DR also agreed to leave the PICC line in until Jim no longer needed close monitoring of blood values.

I got a jar and measured 1200ccs into it and marked a line. I then put in volumes equal to the tea, cereal milk, juice, yogurt, and water for pills Jim had this morning. Yowza!! It amounted to almost 2/3rds of Jim’s daily fluid allowance. Yes we have to cut way back. But the hospital DR had said only clear liquids counted; he said I didn’t need to count things like jello, yogurt, milk, and Boost. GP says to count everything. (I didn’t ask about fluid rich fruits like grapes and oranges.)

Jim was accepting of the further fluid restriction. He handed over his daily bottle of spring water without a whimper.

Jim will get another blood draw tomorrow.

Patrick was here overnight. I got up at 5:45 am and found the two of them watching CNN with the volume way up. I asked whether they were having a slumber party. Jim refused to let Patrick or me clean him up.

I am hoping that in a couple of days, this renewed effort at fluid restriction will increase Jim’s blood sodium and help to reduce the mental confusion.

I ordered Jim a wonderful Christmas gift. He is so cold from the low blood pressure and temperature. I found a pair of wheat slippers that I can warm up in the microwave. At present, I use the wheat bag I received from Martha to heat Jim’s hands. The house heat is at 74, the fireplace is blazing, and he has an electric heater going. I wish he would wear the chemo cap that Cat’s Mom knitted for me, but he thinks it’s goofy.

I’m fine. The radiation burn is gone; just the skin thickening and tightness. I tell you, my faux boobs are never going to sag. I saw my GP on Monday and she said the retest on my liver functions and white blood cell count showed them all in a normal range. I still may have the enlarged liver and tiny “image” on my liver, but that’s for the GI DR to deal with. She asked me to take anti-anxiety meds BID (not PRN) because I lost 10 pounds in 2 weeks from being too anxious about taking care of Jim to eat. Maybe I shouldn’t have given all my size 6 clothes away a few years back.

Patrick won’t be here the next two Sunday nights. Because the Mondays are holidays, we would have to pay double time. And, we don’t want Patrick away from his family on holidays. I am still thinking about having an open house for a couple hours on New Years Day so Jim’s friends can visit for a brief time with him.

The PICC Line is in

Jim's PICC line is in. He was shocked at how easy the procedure was, and he and the 2 nurses and the radiologist joked and laughed around the whole time it was being done.

I treated Jim to a cheese steak sandwich with ketchup as a reward while we were out. Blew his dietary sodium budget for about 3 days!!

He came home a little confused about the line's purpose and care, and refused to let the home health nurse draw blood from it. I had to call back to the radiology nurse to clarify. Jim was happy to get a blood draw without pain.

The good news was that the blood draw showed he hasn't lost anymore ground on his blood sodium level. Still low but no longer dropping.

The bad news was that the gastroenterologist called in the afternoon, three days after I placed a call to him, to recommend against a PICC line because Jim is susceptible to infection. We'll have to be extra careful with its maintenance.

One of the Home Health nurses taught me today about flushing the ports on the PICC line. Piece of cake. Has to be done every 24 hours.

Jim slept in until 1 minute after Patrick left, so I got to get him up and help his with morning cleanup. His appetite is off, and he seems despondent and bored. I played one hand of Go Fish with him and he beat me. I asked him to walk the stairs and he refused. I told him we WERE going up the stairs today, and he had to choose when, and he finally agreed to it and did very well. He even took a few steps outside the front door for fresh air.

Where is this road leading us?

PICC Line

I am taking Jim to the St. Francis radiation department in the morning to have a PICC line installed. This will allow the nurses to draw his blood without using a needle. He's very anxious about having the procedure.

Jim's PT David said that next week is likely the last week of therapy; that he will have taught Jim all he needs to know to accomplish his goal of climbing stairs. Then it will be up to Jim and me to continue to strengthen him. I wish I could find ways to motivate Jim to exercise. I know he doesn't want to because he doesn't feel well, but it is imperative to his wellbeing, not to mention his low blood pressure, that he be as active as possible. David is not available for private-duty PT, but said he would try to think of someone to recommend.

I don't know how long the nurse intends to stick with us. The bath aides are still pretty much MIA. One was supposed to come today at noon, and called at 12:45 to say she was running a little late. Well, yeah! By the time she called, Jim and I already had finished cleaning him up. In the 22 days since he has been home, Jim has only received bathing assistance from this agency's aides twice. Jim calls them "as useless as tits on a boar hog."

Patrick is with Jim right now. It's amazing how Jim likes and trusts this young man. We were truly lucky to have found him.

The DE Hospice Transitions program has finally found a volunteer who will sit with Jim on occasion. Jack. He is supposed to be calling me to set something up. Hopefully, we can get a routine down where Jack comes in for 2-3 hours at a time at least once a week so that I can get to the grocery and Target.

My radiation burn is lessening. The irradiated skin is really tightening up; the "scarring" I was told would happen.

Patrick's Wife is Sick

Patrick showed up at the appointed hour last night, but then had to leave to take his wife to the hospital. Kidney infection, he said. He also had to deal with his 19 month old daughter. The business owner offered to come sit with Jim, but I said no. I am so tired this morning. Jim wanted up at 6:30; I got him up and gave him a small breakfast and fell back into bed. Now he's back in bed (at 9am) and here I am. This will be a disjointed day. I still have to give him his morning meds. This on top of him starting to feel better yesterday,

I spoke to the home health agency; they help to maintain IV meds and PICC lines for their clients. I talked to Jim's GP, and he refused to treat Jim IV at home, but agreed to a PICC line (for blood draws) if I could find a surgeon to put one in. He again said Jim should be in the hospital. I hate this guy.

It's starting to look alot like hospice.


I found a "chat board" for hepatitis. It looks like most people there are caregivers to folks with end-stage liver disease, like Jim. It's a very slow Board, so I may not be able to pick up much. Bet those caregivers are doing something other than hanging out on the Internet!!

A good day to all!

Here's What I'm Thinking/Update

Yesterday the DR said Jim might have to go back in the hospital for IV treatment/monitoring. Jim said emphatically today that he is not going back. I asked my PT Bruiser today whether hospice does IVs at home. She said yes. I started thinking about moving Jim to hospice to get a higher level of medical care at home, and hiring private duty PT for him. I have to talk to his PT David to see whether he does any private-duty work. If he does, it would likely only be on the weekends, so that may not be enough.

(I guess I also should ask the home health agency whether they do IVs.)

I would likely choose the hospice (Vitas) that said they try hard to treat at home rather than send someone to the hospital. The intake person said that their philosophy is to keep end-stage patients at home, even if it takes 24-hour care from them.

Jim is almost the same today as yesterday; maybe a touch stronger. I worked him hard with arm and leg exercises on the couch to try to get his BP up. After lunch, we walked the 6 stairs up and down once. Don't tell him but on the 4th stair up I thought I was going to drop him. I told him to push down on his right leg to bring his left foot up to the next step, and kept pushing himself back. I need to ask David what to do to prevent a fall. Going up the stairs, Jim is above me and has 50 pounds on me; I not sure I could push him forward. Jim is napping now; the stairs wore him out. I hear him snoring on the monitor.

Jim joked around a little today, so that's a sign he's feeling better.

I am starting, I think, to kind of, sort of, maybe understand the relationship between blood sodium and dietary sodium. Jim has low blood sodium and this page seems to describe it--hyponatremia. It's his water intake that is the problem, although we have him on a severly restricted fluid intake diet. It also explains why the DR is messing with Jim's directic medicines. It also adds to Jim's mental confusion, like we need that. But it seems to me we can mess with the diet a little. The bottom line is that it all comes from his failed liver, and the ever failing kidneys he has.

I might try some electrolyte replacement fluids, instead of the protein drinks I have been giving him. Although the DR and nutrotionist were keen on the protein drinks (Boost, Ensure), from what I've read the less protein in his diet the better. His body doesn't process protein well; it needs carbs for sustained energy.

I saw the radiation oncologist this morning about my burns. He said it looks like I am through the worst of it and it is starting to heal. PT Bruiser suggested I cut away the arm hole of the little boy A-shirts I am wearing so that there is less abrasion to the area. DR did give me a scrip for pain medication.

Oh, and yes, we are getting Patrick 4 nights a week. Tuesday (today), Thursday, Friday, and Sunday. Excellent!!

I Dropped Jim

He was ready for bed. We stood him up at couchside and waited a few seconds to make sure he wasn't faint. Most of the way to the bed, he stalled. I was behind him so I didn't see him start his "mini seizure." He started to go down, so I wrapped myself around him and fell under him onto the corner of the bed. He was a little annoyed that I "let" the walker hit him on his face.

Tonight in bed, he is having spells just going from a lying to sitting position.

I have a Surgery Date

I will have my final (hopefully) surgery on February 9. This is the surgery to remove the expander implants and insert silicone implants, and to give me nipples. It will be an outpatient procedure at the SurgiCenter (not sure which hospital), so no overnight. My brother Dave is coming up from the Washington DC area for a few days to watch over Jim and me.

Dr. Boob showed me the implants today. He said that the choice of silicone implant style was recently reduced. Apparently 3-4 weeks ago, the FDA re-approved silicone implants for cosmetic purposes (not just for breast reconstruction, as was the case when I started all of this nonsense). But, an unexpected requirement of that re-approval was that only implants that had been in the marketplace for at least 10 years could be used—for any patient. There was a contoured implant that Dr. Boob liked to use that had only been in the marketplace for 5 years. So now I’m going to receive the plain old round implant.

That’s OK, because Dr. Boob said the contoured implants, which were teardrop shape, could shift under the skin and a woman could end up with the “big part” of the faux boob under her armpit. No thank you. If anything could go wrong with me, it will go wrong.

Dr. Boob said my radiation burn was worse than average, but not the worst he’s seen. Consequently, I made an appointment to see the radiation oncologist tomorrow. Dr. Boob also said that he did not expect an infection to result from the burn.

Dr. Boob has a machine that he says reduces inflammation. I forget what it’s called—something “Wave”—and for 30 seconds, it pulses a bunch of small yellow lights. Dr. Boob said there have been studies showing this Wave machine helps radiation burns, and that I should tell the radiation oncologist about it—maybe they would in time get one. Dr. Boob said I could stop by anytime, free of charge, and use the machine. The problem is getting a Jim-sitter for the 45 minute round trip to Dr. Boob’s office. We’ll see.

I spoke today to a social worker in the Cancer Center. They will help me to the tune of $1500. I have to provide invoices and paid receipts for Patrick’s time or for utilities. This is so great. Dr. Cutter started this ball rolling back when she first heard about Jim’s health. At the time, though, I didn’t need the help, because Jim was in the hospital.

Jim’s blood draw on Saturday showed that his blood sodium continues to drop. According to his GP, this is not something I can affect with diet. The DR is mixing Jim’s meds up a touch to try to raise the blood sodium. And he ordered more blood work for Thursday. Jim has no veins left that the nurses can find; I may need to take him out to a lab for a phlebotomist. I wish the home health agency had one they could send in.

The DR also said that if the med change doesn’t straighten things out, Jim would have to go back into the hospital. A place where he can get what he needs intravenously and be monitored. You should have seen Jim’s face drop on that one. Please please meds do your magic.

Jim is having a rough day. This morning, his blood pressure was so low I couldn’t get it. The PT guy got 98/70 before exercise and 110/80 after a strenuous (for Jim) workout. His temp was in the 92 range. When he stands up, he gets faint. Some of these events are more mini-seizures than fainting, where he goes rigid and shakes and his hands lock onto the walker. He has trouble talking when one of these events is coming on. We are working out a system where I ask him if he is OK, and when he doesn’t respond, I say if you’re in trouble, say “help.” He can manage the single word signal so that I know and I immediately set him back down.

Tomorrow, John K is coming in to Jim-sit. John is the one who helped me get Jim into the house when we came home from the hospital on that rainy day before Thanksgiving. How long ago that seems. John being here will allow me to go to the radiation oncologist, PT Bruiser, the post office to mail holiday packages, the bank, and Target (we need cat litter desperately).

Ennis seems to have broken glucose toxicity. It’s his 9th day on Levemir (thank you Julie) and he was in the lower 100s at +8 and +9. I have a +11 coming up soon. Funny, though, he doesn’t seem to be feeling any better.

Thank you all so much (as always) for your continuing thoughts and prayers for us both.

My Heart Goes Out to Robin

Robin is someone on the FDMB. She is a brilliant woman, and I didn't know her before her breast cancer. She is now in considerable trouble. See this link. A few weeks ago she had a seizure while driving her elderly cat Marie Pearl to the vet. The ambulance got her; the vet's husband got MP, and the result was a finding of a tumor in her brain. The night she came home from surgery she had to put MP down. It does get worse; she says the tumor in her brain was not benign.

There has been so much sorrow in my life lately. Jim and me. Robin. Julie losing Smokey (one month today). This is December; my favorite time of the year because I am a huge Christmas fan. My apologies to my Jewish friends. I am not religious; it's just that I was raised this way and I love the lights and the decorations and the smells.

No tree this year. No decorations. We didn't have much last year either because I had found the lump and things drug on before I could see the breast surgeon.

Max was diabetic this time last year, although on his way to remission. Ennis is diabetic now and not responding to the insulin. Max is CRF and doing really lousy. He's lost so much weight.

I washed Jim today and noticed his right foot was swollen. Edema. Later in the day, I noticed his belly was bigger. Ascites. These are signs of him retaining fluid. I called his GP, who wanted to know Jim's weight. We haven't been weighing Jim. DR held on the phone while I weighed Jim. He's lost 10 lbs since he left the hospital. DR asked how big Jim's belly is. I responded that it is a cantaloupe bigger than it was yesterday. DR said to give him an extra aldactone.

Jim was angry I called the DR. Screw Jim. If he wants to stay out of the hospital, I have to be proactive.

We both got our hair cut today. I didn't have much to cut, but I got trimmed around my ears and neck. Christine, a friend's daughter, is a professional stylist, and she was kind enough to come to the house to do it. She also put neon red "hair glue" on me. What a mess! It is glue! How spikey youngsters put up with this in their hair is beyond me.

Julie S came over today and Jim-sat while I went to Trader Joe's. TJ's has lots of marvelous food, including for "special needs" diets. I found zero sodium whole wheat bread and two types of cookies within his dietary requirements. Low sodium maranara sauce, which he had for dinner and scarfed up. I told Jim he had to stay healthy and not go back into the hospital because of the $150 of food I bought at TJ's today!

Jim was so pleased that he had a PB&J sandwich for lunch. I was so pleased it had no sodium in the bread, the PB, or the jelly.

Hey, Steve, I heard Jonathan Coulton's "Code Monkey" on National Public Radio today. I'm sure you know all about it. (Others: Click on the red "Listen" near the top of the page.) What a hoot! I thought of you the whole time it was on--once I figured out what a code monkey was. You never know what an accountant can learn when she really listens to NPR. Coulton has a great voice, and a great sense of humor. He kept me entertained all the way from the pharmacy to TJs.

On that point, the cream the oncologist ordered for my radiation burns was not a prescription. So why did this take 5 days? Jim and I looked at my burns today. In my armpit, I have burned through what appears to be 2 layers of skin. One more, and I think I'm in deep shit. The pharmacist warned me against an infection in the burned skin. CRAP! I don't need another infection. I see the plastic surgeon tomorrow; we were going to plan the final surgery. (Yep, I wanted to see the implants he is going to install.) I'm sure he will be very concerned and put me on ABs. If he doesn't, I still have a refill of the Amoxicillin he had me on before.

Patrick comes tonight. Jim (who is napping) keeps looking for him. Bless you Patrick!

"Not Patrick" was not Patrick

Mimi. She got here a little late. She had trouble speaking English. She did the house cleaning well while I was gone 2 hours to the grocery.

There are very strange people at the 24-hour grocery in the middle of the night.

There are also very scarey people on the road at 2AM.

Mimi didn't help me bring in the 12 bags of groceries and 2 cases of bottled water. She sat on the couch downstairs. Watching TV with the sound uo while Jim tried to sleep. In her coat and hat, which she never took off.

She asked whether I wanted help unpacking, and when I said yes, questioned whether each item (even the canned tomatoes) were to go into the fridge.

I went upstairs to talk with Deb (my middle of the night friend) and Mimi ran up to get me because Jim was in distress. Distress? No, he wanted to go onto the commode.

Long story short, I told her at 5am (2.5 hours early on her shift) that she could leave. Why pay that much for someone who Jim is not comfortable asking for help?

And now he wants Patrick 4 nights a week, not just 3.

SIGH. I need sleep.

"You know....

...you're not going to get better before you get a whole lot worse."

Jim's GP's statement, as he was leading into a discussion yesterday about us calling in Hospice.

What a flaming asshole. Jim and I were both shocked. What bedside manner this fellow has. We explained to him our plan: we have interviewed 2 hospices; we want PT as much as possible for quality of life, and when Jim's PT David cuts him off, then we will consider our options; and we have private-duty Patrick (or "not Patrick," as Deb calls the substitute we will have tonight) three nights a week.

Jim has been doing really great the last couple of days. Yes we have those standing up, low blood pressure, fainting episodes--but for the most part he is chipper and energetic. Not so energetic that he goes out to get the firewood, but enough that he asks for a fire.

What a sense of humor he has when he is feeling better. We have been joking around alot.

Today I had PT David leave Jim upstairs at the end of his workout. I put Jim into the shower for the first time here. Wow, he needed it. He complained about the cold, so we need to work out something besides the ceiling heat lamp and the hot water to keep him warm.

I still haven't been able to get prescription cream for my radiation burn. It's been a delay with not in stock, no longer being maufactured, call the DR back for another cream, not in stock. The pharmacy promised something tomorrow. NOT delivered, of course--no delivery on the weekends.

It's like every little thing takes so much effort.

I thought about my wrecked car this afternoon and called the auto body shop for the estimate. (Took it in on Monday.) Oh, yes, sure, you want a copy?--we'll put it in the mail. Called the insurance company (my side of the claim) and they didn't know whether the other side (same insurance company) had accepted liability. Called the other side--didn't we talk about this (me: no), she's accepted liability and I have reserved a rental car for you, and by the way, how are your injuries? (I'm fine.)

I talked today with a woman from the company for which I write and update publications. Busy season coming up. I just have no clue how I might be able to do the products I have been updating for the past, what, 8 years. And there's the new publication I was writing that went on hold almost a year ago. She understands, and says that my position with the company appears secure in the long term. She asked about my finances, which of course are dismal.

My full time job right now is taking care of Jim. And he doesn't pay very well. He seldom says thank you, but he keeps the other side of the bed warm.

Today I agreed to $600 of repairs to my garage door opening system. One roller kept going off track, and I was getting tired of climbing up a ladder to fix it. That operational fix would have been only $250, but the fellow also discussed the safety issue of the very very old springs that lift the door. I've known the springs were not safe; I had them cabled when I moved into the house. I agreed to some sort of replacement system that I know nothing about.

Small Victories

Last night Jim made it to the bedside commode 3 times unassisted. Well, I gave verbal directions twice. This is a huge step over, say, Sunday night when I was physically directing him and could not get him to turn or sit without many tries at it.

I found that out our local pharmacy delivers for free. So I won't need to find sitters while I pick up scrips.

Jim has to go out this morning for a visit with his GP. I'm going to try to get the wheelchair into the car to get him into the DR building. Wish me luck!

We Are Settling into a Routine--an Unpleasant One

Jim gets very regular feeding, toileting, and cleaning up.

I get nothing else done.

This is a full-time+ job.

Jim is getting more and more dependent. Jim won't even take the throw off his lap when it's time to get up to the bathroom. SIGH.

I know he doesn't have the mental capacity to understand what is really going on right now, and that I shouldn't get angry when he seems (what in a normal person would seem) lazy or using. But sometimes I do. Last night, during the third situation of him not taking the throw off in the course of 4 hours, I told him I wouldn't be able to take him to the bathroom until he took the throw off. He made a sincere but unsuccessful attempt. I picked the throw up and threw it on the floor. He looked like a punished child. I felt like crap. The only thing holding us together was knowing that Patrick would be here in another 1.5 hours. Jim insisted on staying up for Patrick to take him to bed. And after Jim was in bed, he asked Patrick to come get me so he could kiss me goodnight. I was crushed.

Bless Patrick. Unfortunately, he is not available again until Sunday. We will get a substitute on Friday, a woman named Bimpy, and I could swear that is a name we know from one of the hospitals he was in.

I guess I am getting into a pity party because I am getting a head cold (yes I take Vitamin C) and developing a radiation burn in my armpit and some broken, bleeding skin on my upper chest. I have been using Aloe for a couple of days and will call the radiation oncologist today for a prescription cream Robin suggested.

Well, the more I write here, the less I otherwise get done at my desk.

Bless you all.

I called 911--Updated

Jim refused to go to the hospital. I'm in contact with the home health nurse and the DR. I'll get back with details later.



Update: Jim was lethargic and confused, would not eat, and even though he wanted to pee, couldn't. His temp was 95.2 and I could not get a blood pressure reading.

I called his DR, who said to call 911 and take him to the hospital. Called a couple friends, called 911, and 4 burly guys and one petite woman showed up. Don't know his temp, they got a faily normal BP reading, and took an EKG and said it had some weird showings. They also could not get a pulse at first.

Against their advice, he refused to go to the hospital. I can't continue to put him through weeks of that. Even though I have power of attorney, I agreed to let him stay here.

I called his DR back, and he was kinder,gentler this time, saying I should respect Jim's wishes and we would try to work this through. I told him a home health nurse was on the way, and he said to have her call him. They spoke, and she was to take a urine sample, and blood for 2 tests.

But she didn't have the stuff and had to go to the hospital for it. An hour later, she returned and when we went downstairs, Jim was gone. In the bathroom without his walker peeing, so no urine sample. I have a sterile jar for later.

The blood was hard to draw because his veins are so collapsed. But she finally got it. I should hear about that in maybe 2 hours.

This can't get much worse.

As Liza, who came over today said, I have to give him the choice of the hospital or hospice. This is, I'm sorry, just getting impossible.

It's Getting Really Sad Here

It seems like Jim is wasting away. He was a little clear minded right before he went to bed last night, but he's been there for 14 hours and I can't get him to come awake. He got up 5 or 6 times during the night to use the bedside commode, but could only handle getting to it twice. I feel like we are at a hospice stage, but he still wants PT. I think the therapist may soon say Jim's not progressing so his work here is finished.

Patrick the private duty aide came in on Friday night. What a joy he is. He's an IT MBA student, works in IT at the local cable company, and is going to help with Jim 3 nights a week. He's maybe late 20s or early 30s, and is from Kenya. He did the entire food prep, cleaning, laundry list I left for him and didn't disturb Jim or me. I slept more soundly from midnight to 3 am that night than I had since Jim came home. Patrick handled Jim's toileting 5-6 times during the night. Thank you Patrick. Thank you Deb and Robin for pushing me there. Patrick comes again tonight.

I called some local friends, Barb and Buzz, yesterday to see whether they could watch Jim while I went to the pharmacy to pick up some things. They came to watch the Army/Navy game with Jim. They told me to stay away for 2 hours--to take a break--so I went down to a local watering hole where the friend (Liza) who does my house cleaning was tending bar. Saw lots of friends who are very concerned about us. Recruited one (Julie) to do a little Jim sitting from time to time.

Liza changed her house cleaning schedule to come in on Monday so that I can go to PT and take my wrecked car in for an estimate.

Buzz, Barb, and Julie all have been through the pain of caring for a family member with an end-stage disease. They understand what's going on here, and Buzz said that many of our friends are staying away because they think Jim won't know them and they are uncomfortable with that. Jim's has short-term memory problems, not long-term ones. He knew Buzz and Barb and was very pleasant with them.

The medicare-paid home health nurse and aide are very disappointing. The nurse has "signed out," I think I might have told you, and the aide was to come yesterday, but the scheduler gave her the records for the wrong client. When we finally got this straightened out about 11 am, the aide was 45 minutes away and Jim was in no mood to deal with a new person. So I cancelled. Then I came to find out they have scheduled Jim's aide next week the same mornings that I have already scheduled Patrick for private duty.

And the Delaware Hospice Tranisitions program, which was going to supply a Jim-sitting volunteer, is MIA.

Good news, a friend is coming this morning to finish raking the leaves out of my yard.

As Steph, who is going through demetia with her father, said this morning on the FDMB: "I don't really want to ask 'When will it all end?' Because I don't WANT it to end.. but I want all the major issues to end."

Thank you all/Radiation Over/Jim Sitter Tonight

I want to thank you all, up close and personal, for all the help you are giving us. I know some of you feel you aren't doing enough because of distance, but please know that getting your messages, either here or by email, helps keep me grounded, which helps keep Jim grounded. And I have my telephone friends, who give me the warmth of the human voice. Thank you all so much.

Today was the last of my radiation treatments!! YESSSHHH! The techs gave me a graduation diploma. I feel a little sunburnt the last two treatments, but I fared better than many people do with it. Oh, and the radiation fatigue, but I took a one hour nap with Jim today.

I am neck sore from the rear end accident yesterday, but I am sure it's just a muscle thing and I will get over it soon. I got PT today, and was able to go to the grocery because a local friend John and Jim's PT guy were with him while I was gone.

Sure there were some scary things today. For example, this morning, before therapy, I left Jim on the bedside commode to go upstairs to make him tea. When I went back downstairs, he was gone. I found him in the bathroom without his walker. That's why when I took a nap, I laid on the couch with him with my legs over his lap. I do so feel for anyone else (and I'm sure there are plenty) who are going through dementia with a loved one. But as my PT said today, I have to realize that this is not Jim. At least at this time, Jim is gone.

We get a Jim sitter tonight from 11 until 7 in the morning. I will be able to sleep in my own bed with my kitties. The man, Patrick, is supposed to also do meal prep, light housekeeping, and personal care for Jim. Yes I have a list of things for Patrick to do.