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Author Topic: spinning wheels  (Read 83240 times)

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Offline leatherman

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Re: spinning wheels
« Reply #250 on: April 23, 2008, 07:19:35 AM »
i meant to post this last night. as I'm getting ready to go to the hospital one last time this morning, my thoughts aren't totally sad right now. I've got to cling to a little hope for as long as possible. Jim has wanted to come home so badly through this terrible hospital experience, and he deserves a miracle so much, that I thought you should read this.


After such a sad morning, it's rather odd but Jim and I both seem to be feeling a bit better.

Just knowing he will be home tomorrow, Jim perked up this afternoon. He had a handful of visitors, and talked much more than he had in days. Along with sitting up more, actually watching the TV (when he's sick and conscious, the TV is off. if he's sick and delirious, the TV has been on whatever station he clicked it to), he had the window blinds open all day and only took one short nap. Though it may not be the hope of recovery, the hope of soon being home after so many days, reinvigorated Jim.

The guy that set up the bed and equipment back at our house, had delivered last time, and wondered what had been going on. He said he saw this kind of situation all too often; but he offered a story of hope. His finance's father had cancer, and after the 2nd treatment and 33 days in the hospital, left with hospice care unable to bear the chemo side effects. He laid at home like a dead man for a week, and then recovered just a bit. He even started eating some food again. Three months later the man dismissed hospice care and lived for another three years. Although I've resigned myself to Jim's passing, this story gave me a glimmer of hope of that turnaround we have so been waiting for.

I think both of us felt better too just having made "the decision" finally. During my evening visit, we chatted quite a bit while watching several sitcoms. It was very nice to see him focusing on things besides how bad he feels. I haven't seen him really watch any TV since he's been in the hospital until today. He's also been listening to my mp3 player, and was even humming along to some songs.

Realistically, do I expect a turnaround? No. We haven't planned on his return to be anything other that Jim coming home to die. However, do I still hope for a turnaround? Heck, yes! As I've always said, death is the only problem that can't be fixed. So which way will things go once Jim gets home? We should be able to tell within a few days probably.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline GSOgymrat

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Re: spinning wheels
« Reply #251 on: April 23, 2008, 09:16:20 AM »
I hope Jim feel better once he goes home. Wishing you both peace.

Ford

Offline bear60

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Re: spinning wheels
« Reply #252 on: April 23, 2008, 09:27:04 AM »
I hope everything goes well with getting Jim home.
Poz Bear Type in Philadelphia

Offline AlanBama

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Re: spinning wheels
« Reply #253 on: April 23, 2008, 09:39:50 AM »
It's never wrong to have hope.    Wishing the best for you and Jim, and for peace....

Alan 
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline JDPoz

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Re: spinning wheels
« Reply #254 on: April 23, 2008, 01:42:10 PM »
Hoping for a smooth transition from hospital to home today.
Peace,
JD

Offline Roie

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Re: spinning wheels
« Reply #255 on: April 23, 2008, 02:27:50 PM »
Hoping for a smooth transition from hospital to home today.
Peace,
JD

Indeed. And I am praying for you to guys also.
Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."
MtD

Offline leatherman

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Jim finally returns home
« Reply #256 on: April 23, 2008, 11:44:17 PM »
Jim was feeling no better when I got to the hospital this morning. On top of feeling like crap, he is, of course, very depressed - as are many of us around him. Several nurses stopped by to wish him well, and several others offered me words of comfort.

By ambulance again, Jim finally got to return to his home today just after noon. Rather than pull into the driveway, the crew unloaded Jim by the street allowing him to see the starting buds on the dogwood tree in the front yard, and to see his house for the last time from the outside.

After the crew transferred him to the hospital bed set up in the living, Jim beamed a huge contented smile to be back home. He made me promise to never take him (or his body) back to the hospital.

The coordinator/nurse from Hospice Care was over within an hour or so. Of course there was a ton of paperwork, instructions, prescriptions and details to discuss. Although I've been through this before, my anxiety level here on the first day home is quite high as I want to do my best to give him the care and comfort he needs to get through. Thankfully, after 50 days with Jim in the hospital, I know how to perform the routine caring/cleaning duties; but now there's a whole batch of meds that I must familiarize myself with.

Our OhioMom was over twice - once to welcome Jim home, and then to sit with him as I ran to pick up all the meds and some supplies. Later in the evening, my OhioSister and her two teen-aged kids stopped over for a brief visit. Once we were alone, Jim told me that it wouldn't be much longer. Sadly, I agree.

Though it was a busy day, as evening fell, Jim wasn't very sleepy; but very uncomfortable. A bout of cramps made him moan and cry for nearly 15 minutes. I was very distressed watching him writhe in pain, unable to comfort him. After the cramping subsided (and I cleaned up his soiled linens), I administered a round of his meds, including the pain meds. Within a half of hour, he was feeling no pain and began to finally doze off during American Idol. Hopefully, Jim will be able to sleep most of the night.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #257 on: April 23, 2008, 11:46:37 PM »
Hoping for strength for you during this most difficult time, Mikie.  And peace and relief for Jim.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Snowangel

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Re: spinning wheels
« Reply #258 on: April 24, 2008, 10:22:59 PM »
Mikie,
I am so sorry you are going through this again.  Jim is so lucky to have you caring for him.  I wish you both peace and strength.
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline anniebc

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Re: spinning wheels
« Reply #259 on: April 24, 2008, 10:45:29 PM »
Mikie, this is my first post here but I have been following it from the beginning, all I can say at this time is I hope you find the stregth to see it through to the end..and for Jim I can only hope that when he is ready he will pass in peace and free of pain.

Love and hugs to you both.
Hugs
Jan :-* :'(
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline leatherman

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Re: spinning wheels
« Reply #260 on: April 24, 2008, 11:10:12 PM »
Jim (and I) had a couple of rough spots through the night; but I did manage to get 2 3-hr naps and Jim sleep almost as long.

Today was another busy day. Jim's hospice nurse and the home health aide both came over. I'll tell you what, it's a lot easier rolling a patient, cleaning them, changing linens, and getting the patient back to being comfortable when there are two of you. The nurse and aide (Donna and Donna) got Jim bathed and shaved, and took care of several small sores he's developing. They went over the meds and saw that I had everything handled (heck! I'm keeping charts of what meds I'm administering so I don't get confused)

Since I'm no dummy and the nurse and aide won't be back until Mon, I brought an old friend of mine over to help this weekend. I explained to Jim that I just couldn't be a 24/7 nurse and that this friend had been the one to help me take such good care of Randy while he was at home his final days.


Jim's physical condition (oh, bad news! I had forgotten to mention that the morning Jim was released, the doc told me that he does have a little touch of pneumonia) has remained stable - no worsening; but no improvement either. However, where I had hoped coming home would improve his spirits (and it did for the first evening), the opposite has happened. He tells each of his visitors that "it won't be long now"; while in private, he asks me to guess how long this could drag on or asks me not to let it last too long.

I've been having to dreg up those old memories about Randy, and try to relay to Jim some of what to expect. (I know this dregs up bad memories for some of you too; but can you imagine going through it all a second time?!? At times it's so surreal, I can only be numb.) It's a tightrope to walk trying to determine whether to discuss topics rationally, or emotionally. I'm trying very hard to be supportive and not cry (sad and resigned perhaps. wonder what you call that emotion?); while sometimes I have to let down my guard and show him how much this is killing me too. I know you'll understand when I say that I long for the day when this is over and I can just rest.

Right the last round of meds for tonight and before I go lay down for a few hrs, and let my friend take over until I'm really needed, I should tell you a bit more about me. Today I got to see my doctor again; but this time I got charged for his time. LOL Yes those blood results of mine were in and to be honest they are what I expected.

Last time, the lab had forgotten to do the tcell count, so we guessed it at the regular 250. Now they're 225. Not really terrible for my counts; but I prefer to have them closer to the 300 mark than the 200 mark, because at 200, things can happen - bad things.

The viral load blipped up again (from 189 to 2530). Each of the five blips since 1/2006 has been lower than the previous one, which means the blips aren't getting worse; but it is another blip, which isn't a good thing. But I was expecting some sort of blip after having not been very compliant with my meds, stressed out about Jim, not eating or sleeping properly for the last 2 months - the list of the reasons is a long one.

The biggest problem with this blip is that it comes at a time when I wasn't uncompliant NOR totally compliant to my meds. Now there's the possibility that the virus has become resistant to my current meds. Thank goodness again, I can say, that the meds are better nowadays! Where just a few years ago, I didn't have any more options; now there are probably 5 other types of meds I could switch too.

So the doc ordered up a genotype test (to determine the resistance factor to what meds, and something about a crr5 receptor, and blah, blah, blah. Actually I did understand it all, and have no worries with the doc's line of thinking. (he loves showing me off to the new interns. Not only am I a smart patient; but a patient with compliance issues on a "salvage routine". Oh, and I have a ponytail and had my picture in the paper LOL) At aidmeds.com, I've read up about all those drugs and tests and results. No, I didn't commit it all to memory; because it wasn't a problem for me. I paid attention today; but I'm not worried about the details because I'm too busy determining how to read a 1/2cc of morphine, 2 teaspoons of prednisone 2X daily for two days and draining the foley bag.

But, back to the test. Since it's better to find out sooner and later if the meds I'm taking are even working, I went to take care of that, while I was out of the house for a while. And where do I have my labs drawn? Back at that same damned hospital I thought I had finally left just on yesterday!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

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Re: spinning wheels
« Reply #261 on: April 25, 2008, 09:58:37 PM »
Jim was much weaker today. When he wasn't sleeping, he could only talk in short quiet sentences. Although a few in the family were still holding onto hope; I've seen this stage before and believe the end is very near.

Can you handle one more instance of deja vu?
When I brought Randy home, he only lived for nine days. Between the first time the nurse visited to the second, she was surprised at his decline. I remember the nurse telling me how sorry she was the end came so fast, usually Hospice Care tends to last for several weeks. If she had realized Randy was as ill as he was, they (Hospice) would have done more sooner (Randy passed away after one the second visit by the nurse. They really didn't end up doing very much at all to help because of how the situation progressed.

I think it's happening all over again. Since the nurse and aide were here on Thurs, they decided on a M-W-F schedule - that means that I have to (after only one nursing visit) deal with a three-day weekend before help arrives. I believe that when they get here Monday they will be very surprised.

However, there's a slight chance things might change tomorrow - as a Hospice social worker is scheduled to stop by in the morning. I'm not certain what her job is; but perhaps (if Jim is capable) she'll be able to help me straighten out paperwork. I haven't found Jim's birth certificate yet (when I have I had the time??). I know nothing about the house or car loans, and only have a witnessed signed will.

I found out today when I called Jim's workplace (and heard the answering message he spoke and I put together with music back in Dec) and found out there's no life insurance. Screw the house and car, I don't know how I'm going to have him cremated.

And my friend who came over to help? Her gall bladder problem started acting up and she's either been asleep upstairs in my bed all day or downstairs in the bathroom puking. I'm sending her home tomorrow and trading her in for another one of our friends - a nice young guy (straight and cute) who offered to help out.

And me? With two sick people in the house, I've been busy as heck. I tried to gather paperwork together today; but that was a lost cause. Thankfully, our OhioMom brought over spaghetti and I did eat dinner.

Jim is still demanding me stay by his side quite a bit. And he's earned that right; but the laundry, the dogs, the meds, all call for my attention too. I am trying to stay by him a lot though, as neither of us believe it can be too much longer. I just wish Jim would quit having nightmares. They scare him so. And when he's woken up and grabbed my hand calling out for his mommy and daddy to help, it's more than I can stand.

 :'( mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #262 on: April 26, 2008, 12:10:53 AM »
Mikie, I'm wishing for strength for you, dear.  I hope someone can make it over there to really help you.  And still wishing for peace for Jim.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #263 on: April 27, 2008, 12:10:54 AM »
What a terrible night it was here at "chez leatherman". Every time one patient would moan or groan it got the other one started. My friend was able to pull it together and help me clean up Jim twice; but was still quite ill by the morning, so we called her daughter and had her taken to the ER.

(oh my! she did call me this afternoon and left the info about what room she was in and I never got around to calling her back. But I did get to add another hr and a half onto the half hr of sleep last night, so I'm sure she'll understand when I call in the morning)

The Hospice social worker arrived in time for the chaos of my departing help. While Jim was occupied with the departing guests, the hospice worker had a checklist of items to talk about ranging from Jim's emotional state to religious needs to funeral arrangements, even to the availability of "bereavement care" for me afterwards. There's so much to think about and so much I don't want to think about. Caring for Jim really does occupy all of my time now. (here I am supposed to be thinking day-by-day and they're all making me think about next week. hmmph!) But thank you friends and family for prodding me into thinking about the things I HAVE to think about.

Thankfully, my replacement help arrived on time, and things got better for me. OhioMom brought the friend over and they stayed with Jim while I dashed out on a round of errands (I just had to get away from all of it, even if for a half an hr. I did get lunch so the trip was good for me that way too) By the time I got back both Jim and our friend felt confident enough that things could be handled, they both demanded that I go take a nap. After an hour or so, a few more visitors stopped by (OhioSis again, and the friend I took the SC trip with way back in Feb when this crisis all began) and I got up to assist.

Trying to take another nap, I found myself crying as I contemplated who I would call in what order in case of Jim's passing. As I tossed and turned a while longer, I started writing Jim's obit in my head. I napped a bit more and came downstairs for dinner and Jim's bedtime meds.

Hopefully, tonight will be better with fresh help. Hopefully, Jim will rest more peacefully than he did last night.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Robert

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Re: spinning wheels
« Reply #264 on: April 27, 2008, 01:19:23 AM »
mIkIE

My heart breaks with every one of your postings.

God bless.

robert
..........

Offline AndyArrow

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Re: spinning wheels
« Reply #265 on: April 27, 2008, 03:24:57 AM »
I was glad to read you were getting a little more help and were able to eat a little bit.  Jim is very lucky to have someone who loves him so much and understands how to care for him.  My thoughts are with you both.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline bear60

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Re: spinning wheels
« Reply #266 on: April 27, 2008, 11:40:42 AM »
Mikie
Damn.  That sounds like things are really in high gear. I am amazed at your ability to post through this but hope that it gives you some peace.

Joel
Poz Bear Type in Philadelphia

Offline Longislander

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Re: spinning wheels
« Reply #267 on: April 27, 2008, 12:42:12 PM »
Still reading everyday Mikie, deeply saddened by it all, and awed by your strength and devotion to Jim. I'm glad there are friends and family around you so that you can take some care of yourself through all of this.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline BT65

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Re: spinning wheels
« Reply #268 on: April 27, 2008, 01:59:10 PM »
I'm still here, Mikie and thinking of you and Jim during this most difficult time.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Basquo

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Re: spinning wheels
« Reply #269 on: April 27, 2008, 09:10:54 PM »
Still reading everyday Mikie, deeply saddened by it all, and awed by your strength and devotion to Jim.


This is exactly what I've wanted to say. Thank you, Paul, for putting the right words in my head, and thank you, Mikie, for having the strength to share all of this with us.

Sad and Respectfully,
Creighton

Offline leatherman

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Re: spinning wheels
« Reply #270 on: April 27, 2008, 09:21:15 PM »
What a difference a day makes. After having stayed stalwart through the crisis of the sick help**, I mellowed out and was able to get some good sleep with our other friend helping out. He's been a real trooper through quite a lot now and has my un-dying gratitude. All three of us even slept in on this Sunday morning from about 5 to 10 am. Then this afternoon, I finally got the chance to break down a bit and have my emotional needs tended to.

(**she's in the hospital now with either a urinary tract or kidney infection and has sepsis. she sounded 1000% better on the phone and may be released tomorrow. I told her that Jim and I had heard that line before. LOL You gotta watch those hospital, they won't let you go!)

This afternoon Sunday at my OhioMom's came to our house. My OhioSis (still full of blind hope**) came over and cooked beef and noodles and whipped some mashed taters as the side dish. While she was hoping Jim would be tempted by the smell and at least try the broth, I very much appreciated some real home-cooked food.

(**not that I'm complaining but it must be my lot in life to be caregiver and comforter. Each of our friends is at their own level of acceptance or denial of this situation, and I found myself ministering to their needs - and getting them to accept the inevitable - as much I received comfort from them.)

While dinner cooked and the aroma wafted through the house, Jim even played some euchre! But frustrated as he was that his hands won't work properly now, I called the game over (his team won 4pts to 2pts with Jim the high scorer!) when a few other "Sunday dinner regulars" dropped by for a short visit.

While Jim and our friend/helper entertained in the living, I received comfort sitting out in the garage where we had to move one of the sofas to make room for the hospital bed. Although I really hate all the crying I've done, it was good to have things going smoothly enough that I had some time to release some the pent up grief.

My mom is trying to make arrangements to come up from SC to help me obtain legal aide and get some of the paperwork finished. However, I'm not certain if she'll be too late by the time she arrives in the last half of this upcoming week. Whether she arrives in time or not, I'm very happy she's coming - I need my mom right now. Perhaps we can get legal things done in time to insure I keep the house; but if not, at least, she'll be here to help with the final arrangements.

Things are definitely down to "days", if not "hours".
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #271 on: April 27, 2008, 10:56:36 PM »
Sending you peaceful thoughts, Mikie.  Hang on, just keep hanging on.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline JDPoz

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Re: spinning wheels
« Reply #272 on: April 27, 2008, 11:03:31 PM »
Mikie
Damn.  That sounds like things are really in high gear. I am amazed at your ability to post through this but hope that it gives you some peace.

Joel

EXACTLY, Joel, it's amazing.  Mikie, know that you and Jim are in my thoughts.
Peace,
JD

Offline heartforyou

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Re: spinning wheels
« Reply #273 on: April 28, 2008, 07:18:29 AM »
It feels like a knife in my heart, to read your ordeal.

I have been checking up on both of you every day... and yes, I fear the outcome.

But I repeat how much I admire your strength Mikie.... Jim is lucky to have your around in all of his pain and suffering.

Thinking of both of you here in Belgium

Love
Hermie

Who still lites his candle every day, in your honour
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline bear60

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Re: spinning wheels
« Reply #274 on: April 28, 2008, 12:27:27 PM »
I hope it will be a comfort to you to have your Mom there with you.
Are you hooked up with legal aid through your ASO?
Poz Bear Type in Philadelphia

Offline Teerdrop

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Re: spinning wheels
« Reply #275 on: April 28, 2008, 03:06:41 PM »
My hart goes out to you and I would love to help you if we were closer.
It takes a community to help one in need mental & physical support. Bless you

Offline pozattitude

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Re: spinning wheels
« Reply #276 on: April 28, 2008, 03:33:41 PM »
Mikie,

I don't have words to express my sadness over the situation you are going through at this time.  All I can say is that I am thinking of you and Jim everyday.
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline leatherman

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Re: spinning wheels
« Reply #277 on: April 29, 2008, 12:56:46 AM »
After the big Sunday get-together, Jim had a tough evening clear up to about 1 am. I was very anxious through the whole time, both fearing and hoping that it wouldn't be much longer. However from 1am to almost 8pm, all three of us sleep - fitfully, but we slept.

This morning though I had to make a series of hard phone calls. First to the local funeral home, and then to the local cremation society. The man running the local branch of the society will be coming by at 10am tomorrow to make arrangements. Then I called the local family services org, that runs the AIDS programs, to ask about legal aide, etc. The Ryan White Fund won't pay a mortgage payment; but will pay legal fees for a will. Next was a call to legal aide. Luckily (ha) with my $500 a month and Jim not working for the last three months we qualify for assistance there too. Their rep was supposed to call me this afternoon; but didn't, so I'll be back on the phone tomorrow.

Jim is awake for shorter and shorter amounts of time now. Thankfully during the daytime, he doesn't seem to have the nightmares (that have plagued him since that first night in the hospital) that come each evening. The aide was in early this afternoon and got Jim bathed and cleaned up. (Last night my friend and I got Jim cleaned up and even got the sheets changed - he spilt coke on the bed while we were playing cards; but me and another person did it too, it was just that kind of night LOL). The nurse came in later (how sad! two new hospice patients today), and decided it was time to adjust Jim's meds to a higher dose of morphine to try to combat the pain. (She wasn't crying looking at Jim while we talked; but I could see it in her eyes. Everyone knows that it's soon now.)

Our friend (Mary) that went to the hospital actually had a bladder infection; but is doing much, much better. She was released from the hospital today, and stopped back by to pick up all the things she left the other day. Other friends brought baked chicken an noodles for dinner, along with their new puppy for Jim to see. Puppy kisses never hurt anyone! ;)

While the crowd was leaving yesterday, Jim asked me what we should do for Sean (our friend who has graciously offered to remain here as long as needed) to thank him for helping us. I'm not certain; but I promised Jim I would definitely make it right.

and yes, I fear the outcome.
. .
Jim is lucky to have your around in all of his pain and suffering.
. . .
Who still lites his candle every day, in your honour

Ah, and this is the rough time. While I still dread and fear losing Jim, I find myself hoping the next deep shuddering breathe or groan is his last. But I've been here before. I know when that happens both sadness and relief will well up and clash. Deep sorrow that he'll be gone, yet blessed relief for both of us when his suffering is over. Jim has suffered more than anyone should have to.

Though I had only been able to show Jim the luminere that was sent to him from a wonderful person in these forums, when he came home Wed. I told him how I had been lighting it every night, wishing well to Jim, the other 8th floor patients, Hermie, and all of you people who have shown such support. Every night, per his request, as Jim gets his final meds of the day, we turn off the O2 and light the luminere and think of you as you think of us.

I hope it will be a comfort to you to have your Mom there with you.
Are you hooked up with legal aid through your ASO?
I hope so too; but my Mom can drive me crazy at times. LOL However, I need someone with a saner head, who has gone through some of this before (like she helped her mom with legal affairs when my grandfather passed away).

There you are with that good advice again. ;) and just this morning my Mom mentioned contacting something like Metrolina Aids about legal assistance. I did find an old life insurance policy here but will need the legal help to see if it's worth anything. Now if they'll only get back to me in time!

All I can say is that I am thinking of you and Jim everyday.
Although I should be thinking day-by-day, I do have a couple thoughts about MY future. One, after things settle down a bit, will be to get on the Chantix again and off the cigarettes! Second, in a while longer, will be to volunteer with Hospice. They have positions from clerical (I started in data entry, and am the "computertutor", so I got those skills), to speaking engagements (Have I told you I had a speech minor in college complete? or about playing Snug the lion in 'Midsummer Night's Dream'?), to home health aide (god knows, after 50+ days - I'm not counting any more - of doing and watching, I have those skills down pat! although I can never quite get the depends on right. LOL), to bereavement counseling (oops. I probably need that more than I can give that for quite a while), to volunteer aide. Maybe that's the position. I can handle a little bit of any of those jobs, and I know how badly someone can need that break from constant watching over their loved one. Just having Sean here so I could go get more Coke and cigs or supplies has taken a huge weight off my mind. Oh, I never go very far lest I get a phone call to come home, but for a few minutes I get out in the fresh air and away from it all.

Thinking about immediate plans though, I put out another attempt at help. I called the dealership where Jim and I worked many years and talked with one of our good friends - who just happens to be the big boss' secretary. She reads my blog and is up on how things are. I asked her to see if a petition for final arrangement donations could be posted. Tomorrow I'll call Jim's recent boss and propose the same thing.

See, with no life insurance, I just don't have the means to pay about $1300 for cremation and an obit. Isn't that truly sad? I believe even without ever finishing up his disability claim, that Jim might be entitled to about $250 from Social Security - but I'm not certain. I am certain that my family is graciously putting up some money; but I now need to turn to friends and aquaintances as arrangements will be made soon (I may have NO choice on when to make them).

(If things had gone differently, this was about the time I ask my blog readers to send in a donation to keep my domain (reigningpages.com) online - a measly $150 or less usually. Of course, it's due on the coincedental/deja vu date of May 25th (more on that later). But this year, more important matters take precedence.)

So I humbly ask that if anyone would care to send a donation, it can be sent to me at our address, just mark "for Jim" in the memo space. I promise all contributions will go solely to the cost of cremation and the obit. Anything left over will go to flowers at a memorial service. Contact me for more info.

Finally, a bit about the memorial service. One the first night in the hospital, I had a thought. Several nights later, when Jim received the cancer diagnosis, he mentioned the same idea to me. It took me a while to ask my mom-in-law her approval of our plan. I had to use email because I could barely think of this request without bursting into tears, much less speak the words. She replied the next day, as I knew she would, agreeing that Randy would have approved too.

More than likely, on Sunday May 25th, I am holding a memorial service to Jim, over in North Lima OH, at Randy's graveside. I've already written the eulogy that properly pays respect to Jim, while acknowledging the loss of the two men I have loved. After scattering Jim's ashes there, I'll leave the gravesite as broken-hearted as I was 14 yrs ago, leaving Jim to Randy's care now.

mikie
« Last Edit: April 29, 2008, 11:36:07 AM by leatherman »
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline BT65

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Re: spinning wheels
« Reply #278 on: April 29, 2008, 08:09:04 AM »
Wow Mikie.  What a beautifully written post.  And so heart-breaking.

It's such a shame that it cost so much to die and have a proper service following death.  I, again, am so, so sorry you're going through this extremely trying time.  I think of you and Jim daily and will continue to do so.
  Much luv to you,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

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Re: spinning wheels
« Reply #279 on: April 29, 2008, 01:34:38 PM »
It's such a shame that it cost so much to die and have a proper service following death.

It is rather a disturbing cost, isn't it? I changed the total from about $1000 to $1300 this morning after talking with the rep from the Cremation Socitey. It's $895 for the cremation, another $72 for at least 4 death certificates (at $18 a piece - and I remember from losing Randy that I'll need those), about $150 to run a 25 line obit in the 2 local city papers (those he esitmated it at $200), and a $50 home removal fee for a grand total of $1217.

There's no fancy urn this way, just his ashes in a cardboard box; and no service of any kind. The rep did tell me that cemetaries "frown upon" scattering remains at a gravesite (not for any health reasons but they make $$ to bury an urn). I doubt we have a problem as Randy's grave is in a small church cemetary on the other side of the road from the church. I'm not certain how many we will have at our "unsanctioned" memorial; but a few flowers tossed over the ashes should cover our activity - besides we're "only" there to comemorate Randy's passing 14 yrs ago.

Thank you already to those who responded to my request here, along with several more friends. Jim's ashes won't be released until the bill is paid; but since our memorial isn't until May 25th, I'll actually have a few weeks in May to get together the remaining money.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

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Re: spinning wheels
« Reply #280 on: April 30, 2008, 01:34:09 AM »
Jim was fading away more today. He barely wakes up now. Once when he did and asked for water (for which I had to use a "lollipop" sponge to actually give him the water) he patted the side of my face and say I was his boy, his very good boy. I think he might have mistaken me for Zeus, one of the cockers. LOL (their life has been so confusing too. Alone all that time while I was in the hospital with Jim, then confined to the bedroom alone at night, and outside most of the day; but Jim is so easily disturbed throughout all his sickness, that we've been trying to stay as quiet as possible.) Every time I let them back into the house, Zeus always runs up to the bed, stands up and checks on Jim. If he can reach far enough, he slurps Jim with a big ol' kiss. Regardless of whether Jim knew it was me, or thought it was the dog, it's the sentiment that counts.

I had to call the on-call Hospice nurse this evening and Jim's dosage of morphine was upped again. It's scary sucking up that whole stopper of pinkish, raspberry morphine. Oh I understand that it's to abate his pain; but that doesn't make it any scary giving those doses to the man I love. The fluzanacol is finished, and he hasn't stayed awake long enough today to take any prednosone. Our friend Mary snagged us a mask (when she was in the hospital) to use with the nebulizer rather than the tube contraption, so it's been easier to give him the albutarol for his breathing today. His urine output was next to nil today. He is so wasted away now, and his thin little arms are drawn up, hands clasped (kinda like he's praying) under his chin.

I also talked with a paralegal and lawyer from Legal Aid today. The will I have should be fine. However with the deed and will (which I turned over this afternoon) there's a chance a "quick claim at death" can be filed to make the house automatically mine; otherwise I'll have to get a lawyer myself and go through probate to settle Jim's affairs.

I hope the lawyer stops by her office in the am to check on this "high priority" case before running a "will clinic", or this might not get done in time. My mom and her husband (originally from up here in Ohio) will be arriving by tomorrow night. I still don't know if things will get resolved in time but everyone is trying their best to help me out.

I don't think I'll be sleeping much tonight. Not from worrying about any of those problems; but from listening and waiting for Jim's last breath. Surely, it can't be much longer now.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline edfu

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Re: spinning wheels
« Reply #281 on: April 30, 2008, 02:41:27 AM »
I wish for peace and the end of suffering for both Jim and you.  Both of you are remarkable heroes. 

Love or what you will....

Edfu
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline heartforyou

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Re: spinning wheels
« Reply #282 on: April 30, 2008, 05:25:46 AM »
Dearest Jim and Mikie,

I am sending you peace as well.
Peace to accept what is coming and knowing through the pain of letting go there will be a relief of the earthern pain.

I admire you strenght tremendously.

A warm tender hug to you and to Jim....

Herman

Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline BT65

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Re: spinning wheels
« Reply #283 on: April 30, 2008, 07:18:48 AM »
Just want you to know I'm still here Mikie.  I follow this thread extremely close.  Peace to you and Jim.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Ann

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Re: spinning wheels
« Reply #284 on: April 30, 2008, 09:04:54 AM »
(((((Mikie)))))

Peace to you both...

Ann
xxx
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Offline AlanBama

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Re: spinning wheels
« Reply #285 on: April 30, 2008, 10:02:20 AM »
I pray for Peace and Mercy for Jim

love & hugs to you Mikie,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline pozattitude

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Re: spinning wheels
« Reply #286 on: April 30, 2008, 12:35:57 PM »
Mikie,

I'm with you in spirit and following this closely... :'(
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Offline jockstrappoz

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Re: spinning wheels
« Reply #287 on: April 30, 2008, 10:52:34 PM »
I pray for peace for the both of you - amazing men you both are with an amazing love.

Terry and Richie


Offline Longislander

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Re: spinning wheels
« Reply #288 on: April 30, 2008, 10:59:16 PM »
Just sending some big, warm hugs to you and Jim tonite.

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
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Offline MOONLIGHT1114

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Re: spinning wheels
« Reply #289 on: April 30, 2008, 11:35:23 PM »
Oh goodness, Mikie, I haven't checked in for so long because I have had probs of my own to deal with.

None of mine compare to your situation.

I am so terribly sorry about everything.  It haunts me to read your posts as I have deja-vu of my own with regards to my late husband.  I can't believe what you are going through. 

I will PM you, sweetie.  Give Jim a hug for me tonight.

~ Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline leatherman

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Re: spinning wheels
« Reply #290 on: May 01, 2008, 12:25:44 AM »
Amazingly after his 1am meds, Jim and I were both snoring by 2 (Sean had been asleep since midnight. Poor tired guy; but what a great guy!) and didn't wake up until 6. We awoke at almost the same time, and Jim looked over and said "good morning mikie" and probably gave me his last wink. (I can't wink very good, so I blow kisses. Jim winks at me and I melt.) Jim was hurting some by then; but I got that taken care of fast.

The health aide was over and got Jim all washed up and fresh linens again. Last visit, she had taught Sean and I how to get the diapers on Jim correctly - after 20 yrs on the job, she had a ton of tips to pass along. Today, she taught me how to deal better with an issue from last night - how to change a patient that is unresponsive and unable to assist.

Besides speaking to me this morning, and a little bit in response to the aide, Jim was very unresponsive and asleep most of the day. While Sean and I have been creeping around the house lately and keeping the dogs quiet, things began to change after the aide's arrival. She spoke louder and in firmer tones. I also noticed that Jim wasn't being bothered any longer by the petty little noises in the house. As the day wore on, I finally starting puttering about the house doing light chores since they were not disturbing my honey's rest.

The nurse was by soon afterwards. She discussed more of the signs to be watching for as the end is drawing nigh. I think I saw the only sign that matters to me today - about 3pm was Jim's last tiny sip of water. It was at this point with Randy, that I called his parents to come over as the end was imminent.

Around 6pm tonight as I was realizing that Jim was no longer drinking, it was my Mom who came over. (I'm so very glad to see my Mom and yet so very sad. I'm just full of conflicting emotions right now.) They left SC this morning and made good time. She called me twice to tell me that they hadn't been stuck at the tunnel, nor did they cross into Ohio and run into a blizzard. Unfortunately when I called my trip-partner from Feb thinking that she would get a kick out of hearing about those calls, I found out she was at the hospital where her grandfather is about to pass away. - oh and my mom-in-law is having serious back problems with a possible surgery at the end of May. She (a formerly LPN) had been planning on coming over this past weekend to help out but is unable to sit in one position for drive a car for the 50-60 min. trip over here. - This is one bad spring all around up here with me and my friends, I'm telling you!

After staying for a few hours this evening, my Mom is coming back tomorrow, armed with office supplies, to help me sort through the stack of Jim's papers that I have been collecting from all over the house. I'm hoping Legal Aid calls me in the morning, and I get the quick claim deed handled very, very soon.

Tonight we've been playing episodes from "Xena" that I checked out of the library. See, weeks before this started and before we got the new TV service (att u-verse), we had been getting tons of movies from the library (I was posting over in the "movies, movies" thread back then). Just before Jim went into the hospital, we had checked the library catalog online, and requested the Xena DVDs. During Jim's hospital stay, season 1,2,3,5,and 6 had come in; but since I had no time at home to watch and there was no player at the hospital, I just kept returning them. The day Jim came home (a week ago today) he asked me to check them out again. For five days the damn things have been "in transit" and he asks about them every one of those days. Finally, today, when he's not awake to watch, the Xena discs are here. So I'm playing them for him anyway.

I think Jim had a sentimental attachment to the Xena show and me. Back when the show was first airing, I was recovering from my two pneumonias and finally starting to come back to life. Jim came over and got involved in the series that me and my roommate deeply loved. (one of my OhioMom's daughters -the LPN turned RN) (Why pack #2 of cockers were named Gabrielle, Joxer, Aries and Zeus from characters on the show LOL) During those years, Jim was like our "third roommate" and it was during that time that we actually fell in love and began our 7 yrs together.

I've asked Sean that at least one of the two of us be awake at all times tonight, and he thinks that's the best thing to do to - especially since I plan to make sure Jim stays medicated every three hours. He's suffered enough pain throughout this whole ordeal and really deserves the relief, now more than ever.

Thank you for all your continued support, thoughts, and prayers.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

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Re: spinning wheels
« Reply #291 on: May 01, 2008, 02:21:58 AM »
It haunts me to read your posts as I have deja-vu of my own with regards to my late husband.

I've said it before and I'll say it again, that's probably one of the biggest reasons I ever came to these forums. I find the discussion about LTSs quite humorous at times. Not to disparge anyone, but a couple of yrs on meds isn't the criteria.

I think living with this f-ing disease for over 16 yrs, losing friends, being in the hospital and especially losing a partner sure fits the bill though. (or maybe that's just the anger phase of my current situation speaking out) I was saddened, yet comforted, to come to this site and find so many others hurt and "left behind" as I was. I found people who understood the depths of grief I had come through to get where I am.

Making this even worse for me is that I too am reliving the loss of loved one, as I write these posts each night. I've been very careful as I write; but as I have talked with many of my friends occassionally I have said "Randy" instead of "Jim".

The hope I cling to is that I made it through this once before and I'll make it through a second time. That's exactly why I knew I was going to recover the second time I was hospitalized with pneumonia. I had beaten it once and I'd defeat it again. I hope I have the strength you people say that I have so that I make it through losing a partner again.

It's going to be a long night tonight. I hope Jim finally finds peace.

mikie
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Offline BT65

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Re: spinning wheels
« Reply #292 on: May 01, 2008, 06:56:55 AM »
Mikie, I'm still here, thinking of you and Jim frequently.  I wish peace for both of you.  You can do it, baby.  I know you can.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline MOONLIGHT1114

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Re: spinning wheels
« Reply #293 on: May 01, 2008, 08:24:19 AM »
Good Morning, Mikie, I am thinking about you and Jim non-stop, hoping that somehow my strength helps a little. 

I would say, "I just can't imagine.....,"  but I've been where you are and it breaks my heart.

Take a deep breath and pray for peace.

~ Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline leatherman

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Randy is taking care of Jim now
« Reply #294 on: May 01, 2008, 10:14:40 AM »
As the evening progressed last night, Sean and I discussed Jim's deteriorating condition. Although he wasn't in any pain because of the morphine, his breathing was more labored and he began to sound congested. I tried to stay awake through the night but dozed off about 5:15 am. At 5:30 my alarm, which I set for the next round of meds, went off and Jim was still with us. When the snooze rang again after a few minutes, I realized I could no longer hear him breathing. By the time I got over to him (about 5:55, in another moment of deja vu), I knew he was gone.

I'm so very sad that Jim has gone; but so very glad that he's no longer in the pain that he has been suffering with these last three long terrible months.

Rest in Peace, my love
James Arthur Pollnow
July 29, 1956 - May 1, 2008
« Last Edit: May 01, 2008, 10:20:16 AM by leatherman »
leatherman (aka mIkIE)


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Offline Queen Tokelove

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Re: spinning wheels
« Reply #295 on: May 01, 2008, 10:43:18 AM »
I have been keeping up with everything, Mikie. Sorry for your loss but Jim is in a better place and at peace.
Started Atripla/Ziagen on 9/13/07.
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Offline bear60

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Re: spinning wheels
« Reply #296 on: May 01, 2008, 10:46:15 AM »
Mikie
I am sending you my condolences on the death of your partner Jim.  May Peace be with both of you.


Joel
Poz Bear Type in Philadelphia

Offline pozattitude

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Re: spinning wheels
« Reply #297 on: May 01, 2008, 10:55:27 AM »
Mikie,

I am deeply sorry about your loss.   
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Ann

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Re: spinning wheels
« Reply #298 on: May 01, 2008, 11:35:41 AM »
Dear Mikie,

I'm also very sorry for your loss, but at least Jim is no longer in pain.

I'll keep sending you peace and strength through the coming days - and a reminder to make sure you're taking care of YOU.

Sorrowful Hugs,
Ann
xxx
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Basquo

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Re: spinning wheels
« Reply #299 on: May 01, 2008, 11:40:01 AM »
Mikie, I'm sorry for your loss, but you've been so strong through all this, I'm hoping it will be be downhill from here, as far as settling everything.

Best,
Creighton

 


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