Day 3

Day 3

Sunday, March 30, 2014

I initially started this blog to track the process through hospice, and to have a place to express my feelings.  In order to continue it as a sort of journal, it has to have a new numbering system.  So, Sunday March 30, 2014 is day 3 of “Life without Jimmy”.

The “essence” of him has been gone awhile; but his now being physically gone (if you don’t count the small inimpressive white box in the corner for now) is different, and something I have to get used to.  One Day at a Time.

The memorial service was very nice.  For not having ever met him, the pastor did a lovely job of telling about DH.  You just can’t sum up 71 years in 30 minutes, but he did sum upp his “essense” nicely.  The only problem I had with anything was that there was so little “direction”.  Meaning, I felt completely lost a lot of the time … people kept asking me what should they do, where should they sit .. and there was no one to help with that, and I just didn’t know. And it was strange feeling to be standing in a “receiving line” .. very loosely formed  .. and spaking to people I didn’t know (and didn’t recognize many I should have known).

The memorial display turned out nice.  There were 2 potted plants that I still have to find out who to thank for.  DH’s sister took one to put in her garden, and I have the other.  Sister also put together an absolutely gorgeous arrangement with flowers from her own garden .. exactly the sort of thing DH would have appreciated.  And DS & DIL bought a nice potted tulip which will go in their garden.

Several people either gave me cards or slipped some money into my hands.  I am extremely grateful; and hope I adequately expressed thanks for the cash, because I really have no clue who it came from except for one person.

A couple of “old friends” of mine showed up (and also some classmates of his), for which I’m ever so grateful.  One lady and her husband came all the way from the Outer Banks .. we were close friends 20 or so years ago.  Another friend I’ve known more than 30 years came, and gave me a photograph taken of her, myself, and DH .. all in much younger and skinnier days!

One current close friend came; the person I *thought* was a friend did not come, and I’ve not heard a word from.

Most of the family, and my 20+ year friends came back to the house.  My DIL had made chicken salad, plus bought some “snack trays”.  My sister & family brought some Smithfield’s barbecue.  I hope everyone got as much as they wanted to eat, because apparently there was plenty.  I never went into the kitchen!  Someone fixed me a plate of food, and my dear sister brought me a glass of wine!  My niece brought me some cake later (my SIL brought that).  I totally enjoyed having all the family around .. and liked that the 2 families seemed to mingle (in times past, one “group” would be in one room, and the others in a different room).  My niece’s 3 y/o entertained us all quite well (very smart little kid!). It was very sad when everyone finally had to leave.  A lot of people had to travel a long way.  Even DS and his kids had to head back home, though they waited quite a bit later.  Thankjully DIL is staying with me the rest of the week.

One of the GA boys (DGS14/nearly 15) wanted to spend the night.  Then it turns out he wanted him and TGF’s oldest to stay here.  He didn’t care about spending the night at grandma’s.  He just wanted to be away from the younger kids, watch whatever they wanted on TV (all night long), and no competition for whatever food is left    Oh well.  He tried to microwave a small pizza, which was fine.  Except he apparently has a problem with directions.  He thought the box said 20 ½ minutes (for a 6” pizza???) .. it said 2 ½.  It was a near disaster; and the whole house filled with very acrid smoke.  We had to shut the kitchen door and turn on fans; he and BGS16 had to open doors and windows.  And he cleaned the microwave.  But this morning (Monday) the house still smells funky.  I hope it will be a warm enough day to try to air it out better.

One thing I did notice … none of my smoke detectors went off.  And the batteries were recently changed.  I hope that only means the smoke residue didn’t get that far (only the smell  … my eyes burn, but that *could* be because they burn or itch occasionally anyway).

I sort of feel like the hospice people kind of dropped the ball at the end.  I was told last summer they would be here for me with advice and counseling about end of life planning … and it didn’t happen.  It seems to me like they had somewhat decided he “wasn’t *that* bad off “ yet  .. and when  he took a sudden turn for the worse, they had other commitments that were more important.  There was never anyone telling me what to expect, what to do, etc.  I really felt like I was fumbling through a lot .. and still things I need to do that I have no one to really help me figure out.  I mean, none of them that I thought I could count on.  My DIL will be here with me; and I know I can call on family members if I need to (and I will).  But I still feel let down that in the end they didn’t do what they had said they would.

When the nurse came back Thursday afternoon, she was very efficient.  She called the funeral home; she called the equipment company; and she disposed of the unused meds (the ones they provided).  She said she knew the social worker was already planning to come by, and I’d hear from the chaplain the next day.  Well, by the time the S/W got here the funeral guys were already here … and she was at the end of a long day.  So she only stayed briefly; told me she’d come back to visit just as a friend (which I doubt, she’ll be busy with her life and her job and forget); and I never heard another word from the chaplain.  I understand he has a sick child.  But nevertheless, to not even get a phone call pretty much felt like I’d been dropped like a hot potato.  It’s like no matter what services were supposedly offered, once it was “too late” their services ended no matter what.  I was told they have a “bereavement counselor” who will be available for 13 months (odd time).  Well, no thanks .. I have family.

What I needed was someone to tell me what to expect when we met with the funeral home directior .. he seemed faintly less than pleased that we didn’t already have firm answers in place for his questions. And, as I said above, I had no idea what was the “correct protocol” (I don’t know if that is spelled right nor not).

The thing that somewhat surprised me .. and I guess I have to admit disappointed me a little .. was that no one came here Friday and Saturday.  I did have quite a few “condolence” calls, but all but one were from family.  People I thought were friends, and that live close by, did not come by the house or go to the service.   I know several of DSS’s friend went to his house.  I guess I don’t have as many friends as I thought.   I had been told that people would come by to offer sympathy, bring food, yadda yadda .. didn’t happen.  Most of my family live too far away for a casual “drop in”.  And it occurs to me, there’s really no where I could live (as opposed to way out here in the wilderness) that I would be any closer.

I know, I’m very whiny and self-pitying this morning.  I woke up way too early, and started getting weepy.  I expect that’s going to hit me at unexpected times for quite a while.  The house doesn’t really “feel” different, other than being very quiet without the machinery going.  But it does feel strange to not have obligations .. pills, drinks, dialysis, etc.  Or even not to just keep going back to the bedroom to check on DH.  I find myself wandering back there and just looking around, wondering what in the world to do with all the cluttered mess.  Mostly DSS will take care of sorting things (my bad vision is coming in handy for a change!).  But it’s bugging me that it’s disorganized and there’s trash and random stuff laying around.  I’m going to have to go clean it.

After so many people here, I feel the need to clean the house .. which might be useless.  No CNA, no nurses, just no one at all to be coming by now.  Funny, even the Mexicans next door quit coming (not that I mind that!) And I strongly suspect there’s nowhere elsse I could live that would be any different.

Today (Monday) I still have a few phone calls to make.  I’ve been told there’s a water pipe leaking somewhere in the yard.  I don’t know where (from the description I was given, it shouldn’t be from my well); but the pump apparently keeps running.  So, I have to call the landlord to check it out.  And, I have to let them know the rent this month will be late, because I don’t know how long it will take to get the social security straightened out.  I suspect that being so near the end of the month, DH’s check will go into the bank automatically … and I’m very much afraid they will either demand it back, or just take it back; and I don’t know how long before they’ll correct mine.  I know I can skip the gas payment because I’m well ahead  on that anyway.  But all the other bills will come no matter what.   DH had a personal checking account, and I have no idea what’s in it now (very little I think); but I have to wait about 2 weeks for a death certificate to take to the bank before I can access that.  And I don’t expect SSA will be in any big hurry to pay their paltry death benefit (which, I found out to my eternal disgust, is ONLY paid to the first spouse to die).   It’s all a bit stressful to figure out (and annoying that TGF could care less that I’m stuck with 2 teenage boys to feed .. no clue when someone is picking them up, so DIL and I can’t even go out today to run errands or anything.  I’m absolutely not leaving those 2 here alone!!)

DIL has the neatest app on her phone.  I can’t remember what it’s called, but she can make lists or notes or all sorts of things .. and everyone connected (I presume by a specific password or something) can access it.  That means the kids can enter their own schedules .. games, band, whatever … and they all have the same info.  She can make a grocery list, and DS can go to the store .. and, can remove things from the list as he gets them.  So anyway, she’s making a list of various things as we think of them that need to be done (or just things that I need her help with .. like resetting all the timers since the power went out Thursday night).  So that’s things to get done this week.

We haven’t decided when yet, but I’m thinking maybe Thursday, I’ll go with her back to New Bern.  I’m sure she’s been away from home long enough, although I’m extremely grateful to have her here with me.  I guess I’ll spend a long weekend there (get to go to one of DGS’s soccer games).  Sooner or later I’ll have to be back here by myself, and get things done.  But perhaps she’ll come back with me a little while, because when the certificates come I’ll need to take care of things in the day time, not just Sunday afternoon.

In May the kids will have end of year concerts.  I will likely go back for that; and then will go with DIL to an appointment at the end of May.  Tentatively, she’ll take me to my brother’s from there.  She’ll spend a night and then head home, and I’ll stay with him a little while (details to be determined). I also heard yesterday talk of my sister driving me out to TX to visit our other brother.  I don’t know when that will work out, but I’ll be looking forward to it.

Somewhere in between the visiting, when the weather becomes more stable and everyone interested is available, there will be a trip to the Outer Banks to say a final good bye to DH.

That’s as far as I can “plan” for now.

The sun is shining (it wasn’t evemn daylight yet when I woke up).  I don’t even know what today will bring, but I guess it’s time to get it started.  I can go on and get a shower before anyone else is awake; and maybe even do a load of laundry.  And then, just .. who knows.

Day 312

Day 312

Saturday, March 29, 2014

This was a strangely quiet day.  The majority of it, there was just my DIL and myself.  No visitors, few phone calls.  I know where family is (far away, and will see them today, Sunday).  Apparently I have no friends.  Well, there is one .. who is waiting for ME to call her and say I need something or other.  For some reason, she seems to not like my family, and won’t come here if anyone else is here.  Well, it may be a very long time then because I’m not chasing my DIL off any time soon.  I don’t guess I really *need* her here, but I really enjoy her company.  I used to have another friend, but she deserted me long ago.  I had thought I still had *friends* from work, but I was wrong.

I do have some casual friends from vendor times .. and I got nice emails from them, which was all I would have expected.

I guess I’m just in a bit of a sad mood this morning.  I should not have had any hopes or expectations from yesterday.  In the middle of the afternoon the pastor (actually from TGF’s church, who has agreed to do the memorial service) came by.  Since he never met DH, he needed to meet with family to learn more about him. TGF and DSS came here for that, and it was a nice hour or so.  TGF and DSS stayed a little longer to remove a few more things from the house  (per my request).  DIL and I watched a couple of programs on Netflix.  Late in the evening DS got back with DGD and DGS.  We had pizza, watched a Bones episode, and then played Apples to Apples until pretty late.

As has become very “normal” for me, I woke up very early.  I didn’t want to wake anyone (although they are all pretty sound sleepers!).  I started a load of laundry, bagged some trash, cleaned the kitchen table.  In a little while I’ll go on and get a shower before everyone else is up.

I feel “disconnected”.  The memorial service this afternoon will be emotional.  But I’ll get through it.  I feel like I said my personal “good byes” to DH a long time ago.  But this is public, and final (wlel, almost).  I understand that DSS is having a hard time dealing with this.  He was pretty close to his dad (even though he didn’t show it the last few months.  I believe he felt a bit like I did, that the “real” man was gone from us already).  And TGF is there by his side to help him through this.  And he has friends and a brother who all went “to his side”.  And that my own son, and his family, were here with me.  It still feels a bit (not a lot, but some) like the rest of the world is saying that while it’s very sad to lose your parents,  I only lost a husband; and since he was, and I am, just old, it matters less.

I feel a bit like the hospice let me down in the end.  I’m trying very hard to be fair.  The nurse was here .. she was here Thursday morning and knew how DH was doing then; and when I called her, she immediately came back here.  She at least did some of the things I didn’t know what needed to be done about.  And that’s why I feel let down.  They put off having any discussion with me about what to do when the end came.  There was supposed to have been a meeting that Thursday morning.  But the chaplain has a sick child to deal with.  I understand that, it certainly was a priority.  But later, when DH died, I still never heard from the chaplain.  The social worker got side tracked, and didn’t get here until late afternoon.  Things were “handled” by then.  I like her a lot, but she wasn’t very helpful.  And now, he’s gone, and I feel like it’s a matter of “oh well, too late, but our job is done now anyway”.  I have requested donations be made to them, because I feel like they were here for me up to this week.  And they did provide things that helped and/or comforted DH.

I meant to let them (hospice) know about the service.  I don’t expect anyone to come … if they attended services every time they lost a patient, they wouldn’t have time to do their jobs!  But I felt like it was a type of closure for them to know.  But since I forgot to call until Saturday morning, all I could do was leave a message.  The odd thing was, the answering service told me that “they are all working this weekend, but might check their messages”.  They don’t work weekends.  I guess that’s a “stock answer” or something.  I have to let it go.

After the service today, a lot of people will come here.  Since it’s the middle of the afternoon, hopefully they won’t all be expecting too much in the way of food.  There are still chips, and plenty of drinks.  DS & DIL have bought most of what is here.  I have to be very careful until the social security is straightened out, and I can’t even guess how long that will take.  Everyone always says that when there’s a death in the family, everyone brings food.  Not true.  But it’ll be OK.

Later, everyone will go home.  I think it will feel a lot lonlier then.  DS and the kids will have to go, but DIL is staying.  I will have to deal with first of month stuff this week, but at the end of the week I will go back to NB with her for a weekend.  I’ve never been able to go to DGS’s soccer game, or heard DGD play her flute (probably not anything happening where the marching band will play). 

I’ve talked a lot about traveling, visiting family.  DIL has an appointment toward the end of May.  We talked, briefly, about my going back down to NB to hear end of season concerts, and then go with her to her appointment.  If the timing works out, she will take me from there to my brother’s house … hopefully I’ll then get the chance to ride up into the mountians while rhodendron are in bloom.  Later (and no time frame even discussed yet) I hope to get to visit my brother  & SIL in TX.  Never been there.

Sooner or later I will have to settle in here and deal with my life.  But maybe the family visits will “take the edge off” before I have to do that.

It is a gloomy rainy day.  Seems appropriate.  Sad.

Day 311

Frisday, March 28, 2014

The last 2 days have been a bit of a blur.  For all the months that were too quiet and lonely, now it’s turning into a whirlwind .. but in spurts.

My sister and 2 nieces were here with me Thursday when DH passed on.  I will Forever be grateful for that.  God knows what He is doing!!  And from that point, I have not been physically alone.  And as far as “mentally” .. well, it’s a fact, DH”left” a long time ago.  I was dealing with a sick and confused old man, but not the same person I married over 34 years ago.  In some ways I’ve been “letting go” for months.  But I won’t pretend that makes me any less sad now.  I miss what we used to have.  And now without the daily things I had to do to take care of him, I feel a little bit lost.

On Thursday my SIL came, and my sister had to leave (they had to pick up my niece’s baby from daycare).  Then TGF came, and then DSS.  And they stayed until my DIL and DGD got here. 

On Friday, DIL and I met SIL at the funeral home to make arrangements.  That felt strange for sure.  It seemed odd to be talking about DH in “past tense”.  I handled it better than his sister did.  But I believe I was “better prepared”.

We came back home, and DIL, DGD and I just sort of vegged all afternoon.  I did make some phone calls (and still forgot to make 2.  I feel bad about that since it’s now a weekend, but will try to get messages to people later this morning). 

The equipment supply guy came and took away the hospital bed, wheelchair and oxygen equipment (unfortunately, he could not take the ridiculos amount of surplus tubing they had previously brought.  Anyone need a bunch of unused clear plastic tubing??)  Late in the afternoon DS and DGS got here. 

DS and DIL went to the grocery store.  They got a really lot of stuff .. thought some other people were coming, but they never showed up.  DS headed back home late in the evening with DGS and DGS … they both had activities at home planned for today (Saturday).  They will be back tonight.

DIL had said she would come by last night.  I’m thinking she forgot what day it was .. they have friends over  every Friday night to play cards.  DSS and TGF had said they’d come; but they were waiting for DSS’s best friend to get here from Florida, and I suspect it was too late.  I have a LOT of food here right now!  I may put some of it in the freezer for later .. my budget just got cut in half!

DSS has surprised me at how well he has handled everything.  He did make the comment to me that he has been “expecting” this since he was 13 (about the time of DH’s first – of many – major surgeries).  I know he’s having a hard time, but doing very well.  It helped that I got him busy Thursday night.  I wanted DH’s huge gun collection out of the house.  I’m not in the least bothered by having guns in the house (and as DH’s mental condition deteriorated, they were not only put well out of his reach, all ammunition was put in a separate place even more out of reach).  But,  if there comes a time over this weekend with a lot of people in the house (in particular after the memorial service tomorrow), I didn’t want to have to worry about someone helping themselves to anything and just slipping out the front door .. I’d not know.  Anyway, he took all but one that is hung on a decorative board (that DH painted), and one that belongs to DS (and he took his last night).  I believe the physical activitiy of finding and packing up everything helped DSS a lot.

It is a bit funny though, that it was dark by the time they got home .. and hoping none of the neighbors noticed them carrying load after load after load of guns into their house!!

I have talked on the phone more these last 2 days than I have in months.  Besides so many people to be called and facilities to be notified, many have called me.  I had a lovely long conversation with my youngest DB (he sounded awful, bad cold); and later with my niece, his daughter.  I also had a great conversation with my 21 y/o DGS .. he and his brother (DGS14) will come tonight after his mid terms; but they will stay a few days.

I had a conversation in the morning with a good friend.  I used to meet her sometimes when DH was at Duke (hospital), so I’m sad that won’t happen any more.    Then again, I still have to have eye appointments.  Maybe someone will take me when we don’t have to rush back.

I’m thinking there were other calls, but I can’t remember right now.  I’ve had to be too responsible for too long.  All arrangements are made that need to be done for now; so I’m just not *thinking* about what to do.  Well, except I need to clean my kitchen floor.  Yes, I know, my sister says my house looks fine.  Right now, not so much!!  But mostly, the kitchen floor feels “crunchy”, and I just feel like I need to give it a quick mop before more people start coming over.

I do wish DSS would  come carry the piled up trash off.  It’s cluttering up what should be a useable room (in case a lot of people show up at once).  I know “family” (mine and his) will show up at various times, but I have no way of knowing who and when.  So I feel like I need to be prepared.  And, it’s a fact  (and NOT a complaint) that there is actually no one to physically help me with stuff like that.  My DIL has serious health issues, and can’t do much physically.  TGF has all she can do keeping up with her house and all those boys.  The one GF I used to be able to count on has pretty much deserted me.  I don’t think she even botheres to read email any more, so I suppose I should call her.  I’ll probably also vacuum if I can find a good time.  If the kitchen floor is cruncjy, then stuff is getting tracked around.

And maybe I just need “busy work”.

I slept OK .. woke at 3:00 as usual, but went back to sleep.  I have removed the monitors (they would pick up outside noises, and I thought that might freak me out a little).  The house is strangely quiet without the constant thump of the oxygen concentrator, and the nighttime odd noises the dialysis machine made.  Plus listening to DH breath, which sounded increasingly labored.

I’ve told several people about trips I hope to be able to make.  I want to visit my DS and family in New Bern.  It’s been wel over a year since I was able to go there.    I hope to get to visit my brother and be taken for a ride into the mountains when rhodendrons are in bloom.  I also hope, sometime (down the road, not right away) to persuade my brother to take me on a trip to Savannah .. just because it’s such a beautiful place, somewhere I’d like to get to visit again.

And I’ve never been able to visit my younger brother in all the places he was posted (CG), so will get to go to TX at some point.  With a little luck and planning, maybe even when my niece can be there too (she lives in VA).  As long as someone will come over every few days or so and tend to my cats, I guess I’m now pretty much free to do what I want.  And any time I’m not home, at least the electric bill will be lower.  I have to really decide about the Dish (TV).  I feel like it’s too expensive now.  But when I am here, there are shows I really enjoy.  With limited vision  and no one here to take care of, I’m not sure how I’d stand the evenings especially with no TV either.  And I can’t afford to drink! LOL!

My DIL is up now.  It’s time to finish the load of laundry I started, get a shower, and face whatever this day brings.

Day 310

Day 310

Thursday, March 27, 2014

Today at approximately 1:00 PM, my husband passed away.

Day 309

Day 309

Wednesday, March 26, 2014

I got so used to posting in the morning that I didn’t even think of it last night.  It’s now 3:30 AM (Thursday).   I woke up and can’t get back to sleep, so good time to catch up.

Physical:

There is no real change.  DH is still sleeping.  He’s seemingly in a very deep sleep, and doesn’t react to much.  In the morning (Wednesday morning) when the CNA spoke, she said he faintly squeezed her hand, as if he acknowledged her.  Occasionally when I speak, or touch, it seems like his breathing eases a little.  But through most of this day, there hasn’t seemed to be a lot of change in his breathing (had been being some variation).

The meds seem to be working, and he appears to be reasonably comfortable.  There’s been no “wimpering” or moaning, which was the only way he was showing signs of pain or discomfort.

People:

Besides the CNA in the morning, DH’s brother (finally) came to visit him.  I told him I believe DH did, deep inside, know he was there.  I hope so.  In the afternoon his sister came and visited with me for a few hours.  Everyone seems to let me just babble on; and I’ve noticed I talk a lot about my parents.  I think that’s because it’s the closest to a similar situation I can relate to.

The insurance man dropped of the policy .. sort of a moot point, though he pointed out I won’t “lose” anything, I’ll get back the one premium I aid.

I got phone calls from DH’s other sister; my SIL; DSS, and surprisingly, my son.  Seems like there was someone else .. the phone rang a lot .. but I can’t remember right now.

Emotions:

Right now I just feel sort of numb.  I’m sad of course.  There;s not “weeping and wailing and gnashing of teeth”.  I’m glad there will be family here at least part of the time.  I seem to pace the house and feel a bit useless … no routine at all, and I’m  “lost”.  I spent a lot of time “tweaking” things … improvements to be sure, but not really necessary.  Just “busy work”.

I know the end is very very near now.  I have accepted it.  I don’t like it, of course.  But he’s been through so very much and I feel like he’s finally ready to rest.  He’s said recently (before the last 3 days) that he’s tired.  But that still doesn’t make it any easier to let go.  And I just don’t know how to handle it. 

Every time I try to talk to someone I start getting choked up.  And if if that is normal, I get annoyed with myself.  I’ve been forced to be “strong” for so many years, I just don’t know how not to be.

Day 308

Day 308

Tuesday, March 25, 2014

Physical:

First thing this morning, when the CNA tried to give DH a bath, he wimpered evry time she tried to move him.  She did not proceed, but called the nurse.  When the nurse got here and evaluated DH, she told me to go on and give him another dose of pain med combined with a dose of a calmative.

Since then, DH has slept all day.  He is not responsive when someone tries to talk to him.  His breathing has alternated between soundeing labored, sounding congested, and just sounding quietly “normal”.

People:

The CNA and the nurse were here this morning.  In the early afternoon the “prodigal” son came by … first time since June.  This evening the dialysis nurse came by .. not a “professional” visit, just a personal one.

I had to make some phone calls that felt weird .. to cancel the next dialysis supply delivery (I have a week’s supply on hand, and should I need more than that the clinic will provide it); and I had to call the pharmacy to tell them to take ALL Rxs for DH off automatic refill.

I also talked to DH’s brother (who plans to come tomorrow), and had a nice long conversation with a good friend.

I exchanged a lot of emails today with another good friend, and with my DIL.

Emotions:

Right now, I feel ready for this strange day to quietly end.  I’m sad for the ones who couldn’t be bothered to visit DH until now, when I don’t know if he actually knows they’re there or not.

I feel a little stressed that for all the assistance hospice has offered, it feels a bit like some of the things I need to know how to handle are being ignored.

I feel sad but not “distraught” (sp?)  I’m very glad DIL is coming; for tonight I think I’m happy to be alone.

I feel like there are things I should be doing, but not really sure what.  I did (finally) clean the kitchen floor; and I vacuumed the “public” rooms.  All laundry is put away.

I think I should notify people .. of what?  There’s nothing really to say, and no time line.

Mornings have become a b it hectic, so I thought I could just as easily post at night.  I don’t know how many more posts there will be.

Day 307 - 308

Day 307/308

Monday (& into Tuesday), March 24 & 25, 2014

Physical:

I know I wrote yesterday morning, but I really don’t remember when or how much I wrote.  Anyway, DH really only slept all day.  In the evening he got a little of a coughing spell, and I gave him another dose of the pain med.  But basically, he’s just slept.

This morning the CNA was unable to give him a bath, because he seemed to be in too much pain to move him around.  I still have no idea why the pain.  I gave him more medicine; and the nurse will be looking into possibly a stronger medicine.

People:

On Monday, the chaplain came by around mid day.  He tried to talk to DH, but there’s no way of knowing how much DH was able to understand, or if his answers to questions were actually answeres to what was asked (o maybe to what his brain interpreted that he was asked).

Late in the afternoon TGF came by to bring me something I forgot from the store, and she stayed and talked awhile.  Then DH’s sister came by; and also DSS  stopped by.

I could wish all of them hadn’t waited until this point to visit, but at least they came by.

Emotions:

Numb.  Knowing DH will not be here much longer.  Sadness.  Also knowing the person I knew has been gone awhile, and there’s just a body going through it’s last struggle.  But I still don’t want him to be in pain.  So I have to look at a lot of options … and it’s still a guessing game, because I don’t know what will happen day by day.

This morning DH’s brother called (I am quite positive the sister called and gave him “what for”!).  He said he will try to come on Thursday.  I hope DH is able to know when his brother comes, because he used to ask for him so many times.

The CNA and the nurse were here a long time this morning.  I also had to call and cancel the clinic appointment; and the dialysis nurse wants to come see DH.  That is very kind of him!

One of the options I discussed with the nurse is the hospice facility.   Up to now it has not been a consideration, because they don’t do the dialysis.  But, they do have 24 hour nurses; and I could stay there with him.  The point being, they can better control pain.  I have no idea where his pain is coming from, why  he’s suddenly having so much.  But I certainly want whatever it takes to make him comfortable.  So the decision is that if we are not able to keep him comfortable at home, then it’s time to stop the dialysis and put him where he can not be in pain.

For now, I have meds for him; and as long as he seems to just sleep relatively peacefully, we won’t “rock the boat”, just let nature take it’s course.  Today?  Tomorrow?  Next week?  Not longer than that probably.  Because he has the dialesate (basically, sugar water) at all times, his lack of fluid intake will not affect him as quickly as it might someone else.  So it comes down to keeping him comfortable.

There is so much I need to do .. and at the same time, nothing I can do.

Perhaps today I will clean floors. 

Day 307

Day 307

Monday, March 24, 2014

This morning DH is still not doing well.  The CAN has come and gone.  She called the nurse twice while here.  When she got DH washed, every time she moved his right leg or hip and wimpered that it hurt.  I gave him a dose of pain med, and also rubbed some pain relief gel on both areas.  The CAN checked again before she left, and he  still moaned when we tried to just straighten his leg a little.  I have no idea what caused him to be in such pain; it’s odd because the one constant all along has been that he wasn’t in any pain.

Also,  per the nurse, there’s no need for me to keep trying to give him pills.  He’s having more and more trouble swallowing them; he doesn’t want to drink anything; and they’re seriously not really benefitting him any more (especially the anti-rejection drug that is responsible for many of his problems).

It’s Monday morning.  It’s very cold, but sunny.  I don’t feel anything right now.  I don’t know what I should be doing.  I suppose in a little while I will call his sister.  And perhaps it’s time to worry about cleaning the house.  But for now, I guess I’ll just go feed the outside critters.

Day 306

Day 306

Sunday, March 23, 2014

Physcal:

I really don’t know if this was a good day or not.  In the morning, DH was awake.  He was “trying to start the car” again .. a reoccurring theme.  But he was also a bit  … irritated I guess.  Unsettled.  He kept insisting he didn’t want any covers on him.   At one point I turned on all the lights and turned his TV on.  He did eventually .. late morning .. settle down.  He decided it would be OK for me to put some clothes on him (he’d been laying there naked and insisting he had his underwear on!).  Apparently he tired himself out; he was ready to take a nap.  So I put the sheet back, and a little before noon he went to sleep.  He seemed to sleep very peacefully .. no apneas, no “heavy” breathing (sometimes sounds like he can’t get enough breath), and no coughing.  I woke him up when the kids got here around 3:30; but he was sleepy, groggy, mostly “out of it” the rest of the day. 

I took him a slice of pizza .. he later insisted (and got mad at me when I challenged him) that he ate half of it … he never had the first bite.

He took one pill with some of his drink; but later, I had a very difficult time getting him to take the lat of his night time pills.  He just held them in his mouth, held the drink in his hand .. and simply would not move.  It took at least 10 minutes before I perwuaded him to take a drink and swallow the pills; and he totally refused any more of the drink.

He did go on to sleep, and slept very quietly.

This morning (Monday) he is wakeful, but sounds weak and “froggy”, and seems to not feel good though I can’t tell for sure.  He is still saying his knee hurts, which is the oddest thing of all.

People:

DSS and TGF came about 3:30.  TGF and I did the shopping, got back about 7:00.  We ate pizza, they left soon after.  DSS seems to be aware how much his dad has “slipped”.  He made the comment that he probably ought to call his brother, but he won’t (this is the brother that has made no effort to call or come see his dad since June .. not for birthday, Christmas, anything).

Emotions:

I think I’m a bit numb.  During the grocery run, the majority of the time was listening to TGF complain about DSS.  I spoke up a time or two in his defense, but she pretty much rejected my thoughts.  She’s certainly not interested in anything going on (or not) in my life.  She told her mom on the phone that she had not spent much time with me in a long time and was going to be here more today (Sunday); but in the end, her mom kept calling and whining about some issues, so she went on to deal with that.  We at least got to eat this time; and she did go through the mail enough to tell me what was junk that could be trashed.  There’s a growing pile of things I’d like to deal with, but I don’t know when that’s ever going to happen.  They just don’t have time for us.  And what makes me angry – and sad – is that when DH is gone, everyone is going to be all sad that they didn’t spend more time with him.  The only ones who have the right to be sad are the grandsons in GA, because they haven’t had any choice.

I didn’t sleep well, and got up early.  It’s time for the CAN to get here.

(rest of) Day 305

Day 305

Saturday, March 22, 2014

Physcal:

I really just don’t know what’s going on,.  The nurse did finally call me back, though she wasn’t all that helpful.  One thing she did clear up though is that the two meds are for different things.  One is for calming, the other for pain.  She also said that if DH refuses to eat or drink, or even to take pills (or doesn’t seem able to, willing or not), then don’t worry about it.  It’s just his body slowing down and he doesn’t need those things.  Well, sorry  I’m just having a hard time accepting that it’s OK for him to refuse pills or anything to drink.  

Anyway, whatever was going on Friday, I have pretty much decided maybe it wasn’t from the pain med after all.  Maybe it was just a continuation of whatever was going on Thursday to start with.  He seems to have come out of it.  But Saturday was a rough day.  Or rather, the evening was.

He continued to complain of pain all day.  He says his knee hurts.  I can’t figure out why.  But over the course of the day (NOT all at once) he had the calming med a strong pain med, a Tylenol, a sleeping pill, and some calming gel.  None of it worked .. he would drop off to sleep for short periods and wake up.  And he never stopped saying his knee hurt.

By late at night, when I normally get him settled and turn off the lights … he was all agitated.  He thought he was in a boat (so much for the brief spell of clarity), and it was sinking and he just had to get out.  He kept insisting he didn’t want any covers on him.  Then finally he was ready to go to bed .. but he wanted me to get him up so he could go to bed.  It was about 10:30 before he finally went on to sleep.  And that’s later than I usually manage to stay awake!

This morning (Sunday) he was awake and stirring by 6:00.   He thought he was in a car again.  That seems to be the most frequently reoccurring theme.  It took over half an hour before he went back to sleep (and of course, by then, I was too awake to have any chance of any more sleep).  And he’s still complaining about his knee hurting.

People:

The nurse did finally return my call.  And, oddly enough, in the late evening (right at dark), the neighbors came over .. 2 ladies and 4 or 5 kids.  They didn’t stay long; I suspect the main thing was to ask about the dogs.  I told them they’re NOT mine and I’d love for them to be gone – animal control had very specifically told me they would not come get them (and that I’d have to pay a fee for EACH dog if I took them in).   They’re not the kind of neighbors I feel comfortable going to for “help”.  They’re not family; I can’t even speak to them without children interpreting.  So I feel pretty much alone to deal with this. 

 The kids don’t bother to so much as call, much less come over.  I know some of them live too far away and have a lot of problems right now.  The ones that live close by apparently couldn’t care less.

Emotions:

I’m too tired for any emotions to be “honest” right now.   The last few days have been really difficult.  Something changed, and I’m not quite sure what or why … and have no clue how to deal with it.  TGF made it quite clear to me way back last fall that they “can’t be running out here all the time”.    So “helping” out here is something that has to be fit into her schedule and she will totally not inconvenience herself any more than what she already is.  She’s added things to her Sunday schedule, so “our time” has been cut shorter.  I’m supposed to be ever so grateful for the little time she’s willing to spare for me.  I’m not.  I don’t care if I’m being hateful and selfish.

I know I tend to harp on TGF a lot.  In a lot of ways I do like her; and when given the opportunity I do enjoy her company.  But sh is also selfish and spoiled, and I resent that they’ve expected so much from me, but aren’t willing to share more than a tiny sliver of time with us.  She will occasionally run errands for me .. especially when it helps shorten Sunday errands in order to fit into her schedule better.  But she has never ever so much as offered to run a vacuum or fold a towel.  It’s not that I “need” that kind of help.  I just resent that it never occurs to her to even ask if I do.  They are “young” and working parents.  They live in a huge crappy old house – 5 of them, 6 on weekends, even more when DSS’s boys are there) with very limited heat and electricity.  But they seem to think that we – who worked all our lives - *owe* them every penny we have to help them out (because it took DSS so long to figure out he had to go out and get a real job that actually paid him);  and they think it’s perfectly OK for our house to be a warehouse for anything they don’t want to be bothered with – including the trash.  They (TGF more so, but not by much) seem to think that DH and I, even though we’re getting older and have raised our families, do not have the right to have anything that they don’t have now.  I believe she’d be quite happy to see us shoved into some tiny little apartment where I could just leave DH home alone and walk to the drug store (not the one I prefer obviously) or grocery store … and they’d be quite happy to take all the pretty things they force me to get rid of. 

OK, maybe I’m being unfair.  But I’m just saying how they make me *feel*.  I feel like their lives are SO much more important than ours

DH finally went back to sleep.  Guess I better hurry up and get in the shower while I can.

Day 305

Day 305 mid day)
Saturday, March 22, 2014
I didn’t intend to start posting twice a day; but things keep changing, and I just can’t keep up.  This morning IDH was alert; but he did say he was hurting, especially the right knee.  I gave him a dose of the pain med, and he slept for about 4 hours.
When he woke, I got him to take his pills; but he wouldn’t finish the glass of drink.  After that, while he was still awake and somewhat alaert, I managed to get the pad off the bed and the disposable ones off. (no clean up needed this time).  I got the smaller pad and some more disposable ones tucked under him (he still can’t roll over).  I put the cleaned blanket on him and took the other one to be washed with the pad.
Here’s what is changing: he’s complaining of hurting.  He says his stomach is not still aching (still mostly relieves my mind of the threat of infection); but he just hurts “all over”.  He does not feel *warm* at all (don’t think there’s any fever).  So .. is this some new symptom of something (possibly undiagnosed)?  Is this a result of laying in bed all the time?  The worst fear: no more pain med than he’s had, is his body over reacting to pain when he comes “down”?  I don’t want him to be doped up all the time (especially when he won’t drink anything); but I don’t want him in pain either (and he still won’t drink anything).  I wish I knew what to do.
He’s “huffing and puffing” … says it’s because he hurts.  I won’t give him any more of the (milder) pain med until it’s been 6 hours, which is another hour away.But the concept of hospice is to make him comfortable .. and if he’s hurting, he’s obviously not comfortable.  I just don’t know what to do.
The nurse seems to think he’s declining faster than she thought he would.  But what I’m seeing is that he came back a little from where he was Thursday, but with the added pain.  I don’t know, I don’t know, I don’t know.
One other sort of odd thing.  He’s not “confused”.  It’s like when his body started hurting, his mind cleared.  He knows right where he is and what’s going on (well, mostly).  This is the first time he’s known he was “at home” in many months.  I’m not sure I’m happy with the trade off!

I know I need to clean house.  I’ve done a lot of silly little chores but can’t really concentrate on much of anything.  With DH not eating, it just seems more trouble than it’s worth to fix something for myself.  So I just pick and nibble on junk food all day.
I finally decided I need answers, or at least some sort of direction.  I called hospice and left a message for a nurse to give me a call so I can ask questions.  Now it’s wait and see I guess.

(rest of) Day 304

Day 304 (continued)

Frisday, March 2`, 2014

Physical:

I still have no idea what in the world is/was going on with DH, but this morning he seems back to “normal”.  I think.  With dementia, it’s hard to tell.  Last night (Friday night) was truly awful.  He became so totally unresponsive that it scared me.  He refused to eat or even drink anything.  And he wouldn’t speak to me .. would just look; and I don’t know if he even saw me or understood or anything.  At 9:00 I put his pills in his mouth, and the cup to his mouth .. and he drank enough to get the pills down, and refused anything else.

And he just kept going back to sleep.

I have a suspicion what might have been going on, but I still don’t know what started the whole eisode (beginning Thursday morning when his B/P, for no obvious reason, plummeted).  The nurse had given me some syringes with a med she said I could give him for the pain from his hernia when he coughs.  So late in the afternoon (longer than the prescribed time between doses for the morning med given) I gave him one dose.  It did help.  It took a short time, butmade him comfortable.  But I can’t help but wonder if it made him “too” comfortable.  I think I will be very reluctant to use that again, although if he gets into a lot of pain again I will.  The problem there is not knowing what condition the hernia is in.  It *should* have been repaired when his catheter was surgically inserted.  Instead, it was given a “bandaid”.  Now it’s a problem, but everyone agrees that DH could not survive surgery at this point.  I am glad to know there is something that will ease him, but as I said, will use it very sparingly.

He woke once in the middle of the night.  He did speak then, but very slurred (as one would expect in the night).  By 5:30 he was awake, and as near “normal” as he gets.  I told him it was too early to be waking up on a weekend and he went back to sleep.  About 8:00 he woke again,.  I took him the early pill, and he took it with no hesitation.  He told me he’d been dreaming about construction.  Highly unusual for him to tell me he dreamed something!

This morning (Saturday) he took his morning pills with no problem.  He remembers nothing of the past 2 days.  The fact that he seems “better” reassures me that the cause of all this is not an infection.  Did he maybe have another stroke?  We’ve never known when they happened anyway; but there’s always been clear indications later that *something* happened.

He’s complaining a lot of his right knee hurting.  I have no idea why or where that came from.  Possibily it’s because of him slipping so far down on the bed that he can’t straighten his legs .. but then why only one knee?  Anyway, it was really bothring him a lot, so I broke down and gave him a dose of what I believe to be the “milder” pain med.  He fairly quickly went back to sleep, so it must have eased him enough to relax.

People:

TGF stopped by in the afternoon, briefly 

Emotions:

Last night (Friday night) was totally awful.  I felt afraid, and so alone.  I had hoped DSS would come by sometime today and see his dad.  Since DH has “rallied” a bit, it’s not as important.  That’s good, because coming out here is clearly not a priority.  I believe TGF is trying to “protect” DSS from me asking too much from them.  He’s going off with some friends (unclear if just today or the whole weekend) to a car show.  I know she encourages that .. partly because he’s gotten so grumpy around her kids, and partly so she can do what she wants to do without having to work “around” him.  This morning I got an email saying he’s not only gone this weekend, but weekend after next too.  Plus he’s going to Florida for his best friend’s birthday during spring break.  It just seems they have more and more stuff going on, and doing anything to help us out has gotten very inconvenient.

I really don’t know what I’m supposed to do.  Apparently *most* people if they have a patient with DH’s type issues, put them in a facility.  But him being on dialysis is a major complication and prevents him from being in  a place.  And there is the additional fact that if he were put somewhere, I’d have no way of going to visit, and he’d think he’d been abandoned too.  He’s already disoriented and confused, and I just don’t see it being any sort of benefit to make that worse.  I don’t know that he’d necessarily get “better” care in a facility .. he certainly wouldn’t have someone available at any given moment.  But, no one would have to move him – even just roll him over for washing – alone.  And there would be trained professionals on hand when needed.  No one would be left trying to guess what they’re supposed to do.

There are no “good” answers.  But it sure would help if the only family close enough to be of real help were actually willing to be available when needed, instead of making me feel like it’s an imposition to squeeze us into their busy schedules

Day 304

Day 304

Frisday, March 2`, 2014

Physical

Twice a day “updates” are not really necessary.  But since the whole point here is an “outlet” for me, I’m writing anyway.  It’s now about 4:30 in the afternoon.  This has not been a great day.

This morning the nurse came by (to my surprise) and pre-filled syringes of 2 different pain meds that I can give to DH as needed.  One is for general pain (he’s been complaining of his stomach hurting, and a little bit of his joints hurting) and one specifically for the pain from his hernia.  She also pointed out the med for nausea that I could put in a marked container.  This is all very helpful to me.  Mid afternoon he got a coughing spell and was moaning because the hernia hurt, so I gave him a doxe of the one med.  It took a little while to work into his system (and it’s actually a very small dose), but it did seem to work.  He went back to sleep, which is pretty much how he’s been all day.

This morning .. well, around noon I guess .. he was awake, so I took him his pills (I removed one really big one that he can do without for a day or two if necessary), I had to put them in his mouth.  It still took a really long time – over half an hour – before he swallowed them.  He never did drink more than half his glass; which prompts me to also worry about him getting dehydrated. 

One thing that is really concerning me is that he seems to be completely unable to roll over on his side, or do much of any kind of movement.  That could pose a big problem for me to deal with … and it won’t even matter that it’s a weekend, since some issues need to be dealt with when they occur, and not only on weekday mornings.

People:

The CAN, of course, this morning .. and she also called the nurse for some information.  Then the nurse came by later in the morning as I mentioned.  TGF came by and I gave her some hamburger I’d thawed … clearly no point in cooking anything for DH tonight anyway, and I just won’t bother for just myself.

Emotions:

Right now the overriding thought is to wonder if I’ve done something wrong that has caused this decline so quickly.  I worry about him having another infection … it’s been over a year, which is actually the longest he’s gone without one.  But, he has no temperature as far as I can tell (and did not yesterday morning for sure).  That would be, to my understanding, a primary indicator in addition to abdomen pain.  He has said the stomach ache does not feel the same as the pain he had last year with the infection.  I even used drainage bags overnight instead of draining into the tub  The fluid had stuff floating … my impression was it was fibrin; but it was not actually cloudy.  Am I wrong on that?   I decided to see how he does over the weekend, and try the bags again maybe Sunday night. 

Even though the nurse said he’s clearly declining, she didn’t seem concerned (as in call the family or anything .. not “immediate danger” but definitely sooner rather than later).  TGF thought I should call the family.  I don’t think so, not now.  If he feels bad he won’t appreciate company; and if he’s sleeiping, he wouldn’t know the difference.  And I certainly don’t want a lot of people (especially his sisters) coming over here all long faces and boo-hoo—hooing.  I just couldn’t handle that.

I need to clean my house.  It’s not “awful”; but if there’s even a remote chance of people all suddenly thinking they have to hover, I need toknow I’m not going to feel embarrassed or ashamed.  I feel a bit lethargic, like I just can’t get myself motivated to do anything.

I don’t feel sad right now.  I feel worried, stressed, alone, confused.  And the yard .. oh my what a horrible first impression it gives to my house right now.  

(rest of) Day 303

Day 303 (continued)

Thursday, March 20, 2014

Physical

The day did not get better, just quieter.  DH didn’t sleep much during the late afternoon and into the evening; but he was very quiet.  He didn’t want to sit up at all, refused to eat anything. After getting him cleaned up in the afternoon, I washed the pad again; but then when I went to put it on, I couldn’t get it on the bed.  DH was not able to roll over on his side at all, and I couldn’t get the pad tucked under him.  That also meant I couldn’t get him slid higher up on the bed, and his feet were a bit cramped against the footboard.  He was laying on his side, so it wasn’t as bad excepthis knees got stiff and achy. 

Surprisingly, he slept well, very quietly.  I’m sure he was still having the apnea episodes, but he was not breathing hard or wheezy.

This morning (Friday) he’s very lethargic.  He also seems to be in pain, but it’s hard to tell just what/where hurts.  It might be, at least some, from the hernia.  We’ve known for a long time that it hurts when he coughs.  He told the CAN that was the only time he hurt, but then he kept wincing; and every time she moved him while bathing he said it hurt.

I set up the dialysis with drainage bags; but to me at least they do not appear to be cloudy .. just the transparent pale yellowish that is “normal”.  I debated, but do not think I need to call the dialysis nurse.  I do hope I won’t regret that decision, but it truly does not seem like an infection; at least, he’s very different from when he had one a year ago.  He said the pain (which does not seem to be constant, but hard to tell) is not the same.

Because he was so *different* this morning, the CAN called the nurse.  As a result, there is a pain med in the “comfort care kit” that hospice provides.  The problem is, it’s almost useless to me with my limited vision.  This gets VERY scary; I don’t want him to suffer just because I can’t read labels.  The CAN helped to find the right dose of a pain med .. but it’s Friday.  I likely won’t even see another person untl Sunday.  If he seems to need more I’ll have to call TGF; not sure if she’ll find time to come by or not.  For now I’ll have to wait and see how much good the dose he got gives him (and the nurse is going to order some pre-measured doses).  I also have the Atavan gel I can use.  It’s not for pain, but it will relax him, which tends to help pain levels decrease.  I have that in little pre-measured tubes, so useable.

For now (after 9:00 Friday morning) he’s sleeping and sounds like he’s breathing quietly.

People:

After the volunterr left, there was of course no one else here.  The CAN has come and gone for this morning;.  Yesterday (Thursday) when a volunteer called as they do weekly to see if we needed anything I asked that the chaplain come by IF he had time.  My thinking was that with the things DH said yesterday, and knowing he’s feeling bad and (maybe) declining, it might comfort him to talk to the chaplain some.  Plus, I want him to be able to talk before his mind is too far gone to comprehend what they talk about.

I don’t know if he’ll come today or not; it’s not “urgent”, and maybe he’ll make it next week if not today.

Emotions:

Right now, feeling a little scared of being left alone when I don’t know what I’m dealing with and so unsure of being able to do the right thing.  I know I can call hospice if I need to .. but I also don’t want to “cry wolf”.  If everything that’s going on is a normal progression, there’s no need to be calling someone.  But what if I’m doing something wrong?  What it it’s something that could be fixed if I didn’t mess up.  But the nurse was here yesterday and the CAN talked to her this morning .. so they would have told me if I’m doing something wrong or there’s something else I should be doing.  Wouldn’t they?

A hosrt time ago he called me.  He didn’t need anything, just wanted to know where I was.  That’s “new”, although he often asks where I was.  I told him I was close by and wouldn’t leave him .. that seemed to be all he wanted to hear, and went back to sleep.

I’ve done most of my normal morning stuff by now .. except eat.  I think I need to go eat some breakfast!

Day 303 (mid day)

Day 303

Thursday, March 20, 2014

Physical

It’s only mid afternoon, but I just feel the need to write about today (so far).  This morning DH was a little lethargic when the CAN got him bathed; but did not seem unusually so (he doesn’t like early morning either).  He said his stomach hurt, but that was all.

When the nurse got here, he was still “foggy” (hard to explain .. more groggy, but not the confused kind of groggy).  He told her he didn’t feel good and his stomach hurt.  I had just minutes before she got here finished changing him from a big mess, and he said at the time his stomach might feel a little better.  But, when she took his vitals, his O2 sat was 97%, good.  His temp was normal.  But his B/P was 80 over something, and his pulse rate was very slow and weak.  He asked her what was wrong, and she told him.  (she is not “mean” or anything, but she does believe in being blunt and answering questions._  She told him his health was declining.  He asked if he was going to die, and she told him God calls us all when it’s our time.  He told her he wished God would hurry up and call him.  Later, he woke up a little.  He didn’t want to sit up, but I took him his pills and drink (in a sippy cup).  I ended up helping him get the pills, and he asked me why, if he was in such bad shape, did he need to bother taking all those pills.  Very good question, I told him I’d ask the nurse.  Oh, and she also noted his apnea.  I’ve said several times about him seeming to “hold his breath” .. but this is the first time it was so bad that she noted it. 

About mid afternoon he called me, and said he thought he had another “mess”.  He did.  Very much so, and (pardon the grahic description) very leaky.  I got him cleaned up and the bed pad into the wash AGAIN.  He promptly went back to sleep, but he does seem to be breathing more regularly (no notable apneas). 

He had no temperature, but I am wondering if he’s having any residual effect from the catheter being cut on Monday.  I will use drainage bags tonight to try to see if there’s any cloudininess.  If there is or even if he’s still complaining about his stomach hurting, I may call the dialysis nurse.

The hospice volunteer called (always on Thursday) to see if we needed anything.  I asked her to get a message to the chaplain asking him to come by tomorrow IF he has time.  I think, considering the above coversations, maybe it would help DH to have a conversation with the chaplain.

People:

It’s been a surprisingly busy morning.  The CAN early of course.  Then the nurse around a little after 10:00.  We had time to talk before she went in to check DH.  Then the volunteer came, and also her supervisor came for a brief visit.  The volunteer stayed until a little after 2:00, helping me sort through old spices, and clean and organize one corner of the kitchen counter.

Emotions:

Am I the one in denial?  When the nurse told me there was a very noticeable decline in DH today, my only thought was “yeah, I’ve seen it before, he’ll snap out of it in a day or two”.   And maybe he will.  I find it hard to accept that he could go that far downhill that quickly .. I expect it to be a slow somewhat steady decline.  I do know that there can be “triggers” that cause sudden dropps in his condition …. But I tend to think of those mostly in terms of his mental condition, not physical.    I know his physical condition can change of course .. but what (and when) would cause such a sudden change since yesterday?

Despite all the people in and out this morning, I feel really alone.  I don’t want to call any of the kids and get them all bent out of shape  over what might not mean anything significant.  So there’s really no one here to talk to.  I have to just drag myself through the rest of this day, and see how things are tomorrow.