Caregiving - or - Russian nesting dolls

Delicate thoughts of a dangerous mind.

Re: Caregiving - or - Russian nesting dolls

Postby neildarkstar » Sun Feb 08, 2015 12:36 am

Sometimes it seems like it's hard to catch a break, doesn't it? I'm glad to hear that you are fine, even with all the bad that has come calling on you... That's a very important distinction to be able to make. Too often people concentrate on the things and circumstances that make them unhappy, and they forget to enjoy the happiness they would otherwise have... eh, if that makes any sense to you. Forgive me, your post made me a bit pensive and perhaps philosophical so I may not make very good sense.

I'll give you a little update on what's been up with me. Lessee now... My wifey got all acrobatic, fell, and broke her right arm early last year. She's right handed, of course, so the little things she could do previously became exponentially harder. I told everybody she's had a pole dancing accident, but the pole was okay... She may forgive me someday, eh? Then last June, she found a lump in her breast, and had a partial mastectomy. The post-op labs came back saying they didn't get it all, so she had to go back for more surgery.

Now they're talking reconstructive surgery, but I worry each time she has a procedure because the anesthesia can be as deadly as any disease given her respiratory and immune system issues. I'm not encouraging her to have it done, but it's up to her, of course.

Still, the years keep going by, and she's still kicking, so it looks like the doctors are missing out on their estimates of how long she'll make it. My situation's kinda like yours Elaura. I sleep when I can, and I'm always ready to do whatever needs to be done. Change bedding, tend to her oxygen machine, get her a drink, whatever. Needs don't stop just because it's 3am, eh?

I guess I told y'all that I broke my ass last December (my tailbone anyway :biggrin: ) but contrary to all grim predictions by my doctor, I seem to have recovered almost completely. Since my tailbone confounded the docs, they decided that I must have SOME kind of issues, so I'm currently undergoing a cardiac monitoring program, which means I have to wear a heart monitor for the next 30 days. I have the electrodes (3 of them) attached to my chest, and when I take them off, I look like I've been making love to an octopus... Bright red (and sore) rings form under the electrodes even though I place them differently every day.

I can sure empathize with you shoulder issues. It seems I have spurs in my right shoulder, and the collar bone has grown overly attached to things it shouldn't. Guess it matches the rest of me. :biggrin:

Sorry to hear about you dachshund's difficulties. When animals get hurt it's often like a child has been injured, and hard to deal with. Our dog developed some kind of... eh, instability (like a stroke or something?) and wandered off very early one morning. Our local Chief of police found him wandering down the road about a mile from home, and since he seemed in really bad shape took him to a vet who put him to sleep. The Chief didn't know he was our dog, so it took a few hours before I learned what had happened.

We have four cats though... Let me tell you about the one who has decided I belong to him alone. He was raised feral, because we simply couldn't catch him for the first three or four months of his life. talk about paranoid! In fact, we called him Psycho-bitch for a long time, until we discovered that he was actually male. I don't know if he had gender identity issues or not, but he was as crazy as they come. Now we call him "Psycho Dude". He's an old cat now, and as a Tom wandered around tomcatting as he pleased. He'd come home for a day or two every few months, get fattened up, and take off again.

So anyway, right after the first of the year, he showed up for the first time in maybe two years. Honestly, I'd thought he was dead for the last year or so. anyway, he comes walking in and starts meowing at me in that voice that says Look at me! I'm starving to death here, and you need to give me some milke, and food, and attention!" Hmmm... I didn't point out to him that his condition was the result of his own bad habits, I didn't think he'd appreciate it. He's just skin and bone, there isn't a scrap of meat or fat on him anywhere, and I'm telling you, he STINKS! I can be playing Skyrim or whatever, and I can smell him coming up behind me before he gets to within 3 feet. I have no clue what it is that makes him smell that way, there's nothing I can find or clean off, and it doesn't get any less odorous as time goes on.

He's sick and old, but I'm not going to take him to the vet. If I were to put him in the carrier and take him, he'd never forgive me. I just give him table scraps, whole milk, and sometimes tuna along with his regular food, but the interesting thing is that he now seems to just want petting more than anything else. Some ways, he reminds me of me... :biggrin:

Financially, we are better off than we have been in a long time. Not wealthy or anything, still officially in the poverty level income-wise, but we have no mortgage, or rent, or credit card debt due to my insistence we pay cash for whatever we get. We don't want for anything, though by most standards, we don't have much. Like you, we're fine.

As a matter of fact, I know you are saying you are not asking for sympathy or help, and I respect that, but if you need a little help I'm here for you. I can't do all that much I suppose, but if you need a couple of yards for an emergency, don't do without, just let me know and we can call it a loan if you like. Oh, in case you're not familiar with the term, a "yard" is a hundred...

No, I'm not the charitable guy who gives to everyone, but let's just say I owe someone who is beyond getting paid back, so I help who I can when I can in his name.... he bailed me out a LOT of times when I had nobody and nowhere else to turn.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Sun Feb 08, 2015 1:23 am

Thank you, Adul. You're absolutely right. In my opinion, hospitals are for the treatment of acute problems, not chronic conditions. If I can't be sure of a reasonable exit, I'd rather not go in at all. Naturally there are exceptions, but, in my family, when a person is ready to go, they say so, whether it's to the hospital or Heaven.

How did I know you'd be able to identify, Neil? :chinscratch: From what you've said over the last couple years, I figured you'd been there. That cat sounds a lot like all of us here at the old folks home. When everything else is going to pot all you really need is someone to pet you and let you know they care how you feel. I can't do a lot for my mom's pain and she's still afraid of taking an extra morphine, but I can sit next to her in the bed, cut her hair, rub her worst sore spots and make sure every time she relieves herself, she and everything around her remains clean and dry.

As for "paying it forward" I know what you mean. It's a better philosophy than charities or karma, or Christianity. If you can remember what others have done for you and do the same in memory of them, it's a helluva thing. I greatly appreciate the offer, and believe me, if we were wanting for anything I wouldn't get in the way of your blessing by turning you down, but right now the only thing in danger of crashing is my credit score. We have a house and a vehicle, it's not like I'm going to need it.

I don't believe in worrying about doctor and hospital bills when they've already gotten 80% from Medicare and the credit cards can all go to hell as far as I care. When I know I've paid for what I bought and what I'm paying now is interest, I figure they've gotten their due as well. Fortunately, we bring in enough to pay the electric, get propane (though we have a leak and have had to buy it twice in as many months), and food (we have a well and septic, so no worries there). We all have medical coverage and our medicines are paid for as well. I would certainly not be too proud if we were about to lose our house or I couldn't pay for groceries, but we're still far from there. Hell, we still have some old gold jewelry to sell, but I have to admit every "diamond" in the house has been replaced except for the one in my engagement ring. The only reason i haven't pawned that one is because it was Jac's mother's set and she is probably planning to haunt me already simply for ever taking it off.

I agree with you on your wife's surgery. I truly believe doctor's offices and hospitals are the most dangerous places in America right now. You bring home way more than you bargained for, if you're lucky enough to get home at all. Something my stepdad told me rings in my ears everyday, though. He was referring to my mom at the time, but I'm pretty sure he was prepping me for his dying days as well. "She's an adult. It's her decision whether to have treatment or not." Between that and the memory of taking my grandmother's blood sugar the morning she died keep me from assuming that particular burden. I should have loved and petted and comforted my grandmother more and worried about whether she was taking her medicine on time or keeping her blood sugar under control a lot less. Luckily, I'm getting a second chance to do things right.

I'll leave you with a funny thought, at least I thought it was funny. Right before I put Mom back to bed this last time she asked "What if I don't die?" I answered, "Well, that's OK too." It reminded me to remember to tell her more often that I'm doing just fine. Jac and I are in a rhythm, and she could remain as she is as long as she can stand it. We're even prepard if she gets worse before the end. She'll go the way she lived, on her terms.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Tue Feb 24, 2015 2:09 pm

Obligatory WARNING: The following content may be disturbing to readers living on the Good Ship Lollipop, where bon-bons play and people only die cleanly in hospitals to magically show up again at their funerals gift-wrapped in ten-thousand dollar coffins wearing excessive makeup so that people can say they look like they are only sleeping, because everyone styles their hair, puts on their best suit, and slathers on the makeup just before going to bed. If you are disturbed by anything remotely resembling reality and/or are here for fun and games (understandably, since Wolflore is primarily for gamers) turn around and click another link. This is still my subforum and this particular post isn't fun, though irreverent, black humor is certainly welcome.

Prologue: "The calm before the storm." An interesting phrase to contemplate when a loved one is, what Hospice calls "actively dying". I've been on the classic "death watch" for several days. Mom is most definitely displaying all the classic symptoms of being within the last three days of life (according to Hospice *very* general guidelines).

Track 1: I sit here, next to her bed, with the TV on MTv Totally 80s and my laptop on my lap. I imagine if anyone looked into my searches for the last few days, they'd be pretty worried about my state of mind. I can't seem to beat myself with enough images of death. On the lighter side, I now know exactly how the Kaddafi family males met their end and learned how to spot even a really good CG hoax as opposed to an actual crimescene. I've also been watching Chiller marathons of Ghost Whisperer, Tales from the Darkside, and several hours of Bones. Notice the trend? Luckily the two episodes of Supernatural that I caught did not draw me in and enlightened me as to why fan-fic writers seem obsessed with putting the angsty brothers in bed with each other. Every episode was the bromance answer to Mulder and Scully.

Track 2: These pursuits have been punctuated, rather startlingly at times, by the dreaded phone. It seems like I just keep saying the same things over and over. Being my mother's healthcare proxy, all questions are asked of me and all answers are expected of me. I'm sure Jac hears me giving Mom's 2015 medical history in my sleep . . . when I sleep. When she could enunciate, the only word Mom could remember was my name. Now, when she has her brief moments of semi-consciousness, she just calls out in pain unintelligibly or utters some mild profanities and slips away again. I promised her she wouldn't be alone. It was the only request she made. So, when the phone rings I've developed a sort of script in my head. Bill collectors get a promise to get a copy of her death certificate if they promise to quit calling; Hospice gets my standard as-long-as-she's-comfortable-I-won't-have-to-hurt-you 'tude, and relatives are let off the hook with "follow your heart, but you really don't want to remember her this way".

Track 3: I used to be completely unable to stand being around loud breathers. It would be like nails on a chalkboard to my younger, un-medicated, borderline-autistic self. I'm so grateful I am, at least for the time being, over that. Mom has always had narrowed nasal passages, so she breathed primarily through her mouth, but she was a smoker, so it wasn't really obvious. Now, her mouth is wide open 24/7 and her breathing is wildly irregular. If I catch her at the beginning of a period of apnea, I *almost* allow myself to believe she's finally going, but then she takes a deep breath and her duracells are recharged again. Just now she's started sounding like she's got something caught in her throat, though, and it frightens her, so scopolamine patches may be my next demand from Hospice.

Track 4: So, as I said, the sound of the breathing doesn't bother me (except when she's got that frog in her throat); however, her breath is almost more than I can handle. I have been witness to, cleaned up after, and browsed online bloody messes that would make an average person turn their stomach inside out. I've held others' hair at the porcelain altar, cleaned up when they (or I) missed the big white opening, and wiped raw baboon butts when their owners were too far gone (for whatever reason) to clean themselves. But the one thing I've never been able to stand is mucus membranes and what makes them that way. Show me a sinus surgery and I can't get my head between my legs fast enough. I can't even spit, because of the thought of what it passing the wrong way through my mouth makes me retch.

Naturally, one of the almost universal symptoms of impending death is a slime that fills the person's mouth with such a foul stench cleaning the catbox is a relief. Not exaggerating. Last night I emptied the fermenting kitchen waste container just to get the smell out of my nose. The sense of smell is a paradox, really. You can overwhelm your receptors to the point you can smell the scent even after it's been removed, you can overwhelm your receptors to mask one scent with another, but recalling a scent arbitrarily from memory is like trying to remember pain. You can remember the circumstances, but most people can't actually relive the sensation as we can draw a mental picture or recall a melody. However, a scent attached to a memory is a virtually unbreakable association. I mention this because every time I smell my mother's breath, I am thrust back into the memory of my father's death from brain cancer in 1995. The memories are coming back like a damn Super 8 home movie. I think I'll change the subject now; I'm making myself nauseous.

Track 5: Last night I had a disturbing revelation. If my mother were any species but human, I would have had her euthanized to prevent unnecessary suffering. I understand there are people who will go to all possible extents to save a pet's life, regardless of age; however, that's not how I was raised. In my family, if an animal's suffering cannot be alleviated without causing further suffering, mercy is the order of the day. There are far worse things than dying peacefully in one's sleep. Honestly though, if someone told you your dog was in incredible pain, could barely breathe, and was completely and permanently incontinent, immobile and unconscious, what would you do? And yet we can't even legally offer the same relief to our nearest and dearest human family. FUBAR.

Epilogue: And just think, I might get 24 hours rest after she passes before I have to get my head together and deal with the paperwork. Surviving a death is much more complicated than bringing home a new baby, especially where annuities, insurance, vehicles, and social security are concerned. Word to the wise, don't even think about using that Social Security direct deposit without triple clearing it with them, even if you share a bank account with the deceased, or you might just end up having to pay it back, with interest, under threat of garnishment. Oh, and make sure all insurance premiums are paid until the companies get that death certificate, or you may very well regret it.
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Re: Caregiving - or - Russian nesting dolls

Postby neildarkstar » Tue Feb 24, 2015 4:49 pm

It would be great if there was just something a person could say that would ease the pain or make the death of loved ones easier to bear, but it usually seems there is no such magic word or phrase. All I can do is offer my sympathy and condolences...

I'm also one of those people blessed or cursed with a strong stomach and an ability to weather stomach turning events. That helped a lot when I worked at the State Hospital, and the experience of working there just made me even more immune. Memory associations with smell are, for me, incredibly real. If, for instance, I think for a moment about branding cattle, I can literally smell the hot iron, and the burning flesh and hair. This makes things interesting for me as I play Skyrim, because when I'm riding a horse in the game, every now and them I'll smell the leather of the saddle, the smell of the horse, the smell of fresh horse shit, and sometimes even the hay. In other conditions, I have some issues when I smell formaldehyde, or alcohol, and some other medications, because these things are indelibly linked to bad memories that I prefer not to remember.

Your "track 5" disturbing revelation is something I can identify with. Here in Oregon, euthanasia is legal under certain circumstances, and I think it's a good idea when there is no hope, and only unending pain with no quality of life.
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Re: Caregiving - or - Russian nesting dolls

Postby fleet » Tue Feb 24, 2015 5:55 pm

I'll pray for you.
Why? I like big ones, that's why.
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Re: Caregiving - or - Russian nesting dolls

Postby Adul » Wed Feb 25, 2015 2:42 am

That was a hard read, E, and I can't imagine what living through it could be like for you. I wish there was something I could say to offer relief to you and your mom.

I too support euthanasia, and it's absurd to me why humans of all the animals living in our society need to suffer the most drawn out of deaths. I think those who oppose the idea on a conceptual level have never had to witness the immense suffering dying persons often have to endure.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Wed Feb 25, 2015 4:28 am

Thank you all for your thoughts and prayers.

Neil, I wish I had your ability to recall scents, especially pleasant ones. Scents are definitely a strong memory trigger for me, but unfortunately, a situation will not recall a scent for me that isn't there. Interesting you should mention medications. Jac's doctor put him on the same medication (Flonase spray) that I was put on when I had my worst sinus problems. I got an infection in Basic Training and had it all through AIT. A total of about nine months. I finally had surgery after I graduated, but I'd been on that Flonase stuff for a very long time. Now, when Jac uses it, I find myself right back in the middle of training, struggling through PT runs in the dead of winter when I couldn't breathe.

Adul, I'm sorry if it was difficult for you t read, truly, but I'm incredibly honored that you did. Not everyone is built to see the harsher side of reality and that's okay, but it is special when you meet someone who, like yourself, can face the truth and accept it in all it's gory glory.

I was truly blessed when I found Jac, though I didn't fathom how much until today. I was able to go to sleep after the last visitor and phone call this afternoon and I slept for a good ten hours straight. When I woke, Mom was resting comfortably (hadn't moved, but also hadn't called out), he had gone to the store to get me some yogurt (I developed thrush sometime in the last week and after one bowl of yogurt, my tongue no longer feels like I've been lifting weights with it), and we had a new, unopened bottle of morphine for Mom. I had chastised myself greatly for not checking before the Hospice nurse left and expressed concern that I would have to be careful with what we had left to be sure she would have enough to last until morning. He's amazing. He just did what needed to be done with absolutely no resentment or drama.

Which brings me to a new understanding of situations like yours, Neil, and that of my mom with my dad. I know my mother had a good deal of help, especially since I was a big part of that, and I'm sure you are not alone in your caregiving, but I finally realize how much harder everything would be if it was Jac who needed so much care. If I didn't have that one person I knew I could always rely on, because that was the person who was sick. I am in awe of your strength and that of anyone who has to witness the decline of their partner. No matter how long you are with that person, Jac and I hit five years last December, you always come to depend on them to help you bear your burdens. Only in my nightmares can I imagine going through all this without him. God certainly knew what He was doing getting us together when he did. My heart goes out to those who are in the position of going through all this without the comfort of sharing it with person you always thought would be with you in your foxhole.

Funny thing though, I tell all of Mom's friends and relatives I wouldn't wish seeing her like this on my worst enemy, but for my own self-preservation, I let my best friend do it everyday. I even have the gall to ask him for help with the worst of it. just wow. Did I mention last week I woke him from a sound sleep by "dropping" a bruised and bleeding dachshund in his lap and telling him she had to go to the vet immediately? Granted, I am certain to clean up everything and only hand over a tightly closed trashbag at the end, whish is probably the only thing that keeps him from running screaming from the house at times. Well that, and the fact he knows when it's him I'll catch him, clean him up, and doctor him, too.

Oh, and I've never made him bathe the dogs, either, even after a skunk attack. :lol:

Small update for those playing the Hospice Game at home: I got some mouth swabs from Hospice today, but I wasn't very effective in their use the first time. I'll have to try adding a bit more moisture. There are supposed to be pre-moistened mouth swabs that taste lemony, but that's not what I got. Mom didn't get her bath today because she is at the stage where any manipulation of her body causes her to wrinkle her brow and cry out in pain, no matter how much morphine I've given her. There is a drug called indomethacin; it comes in suppository form and is used in people with bone cancer who also are in intense pain when moved. I've put in the request, so Mom can be cleaned and turned, but bedsores be damned, I'm not letting anyone move her if it causes her more pain that what we're trying to avoid by doing it.

Finally, her breathing has become the classic "death rattle". Physiologically, it's caused by that frog in her throat I mentioned earlier, but it no longer scares her and doesn't cause her pain or restrict her breathing. However, Hospice is also concerned with the sanity of the patients' families, so they offer a scopolamine patch for the patient which dries up that phlegmy stuff so we won't have to hear it. I'll be sure to ask for that tomorrow. I'm not sure I'll be able to deal with it tonight, but we'll see. Maybe I can keep myself distracted with FreeCell and rearranging my Morrowind textures?

Now, with an IV and a feeding tube, Mom could remain in this condition for weeks, months, or even years if her immune system isn't compromised. Fortunately, Mom had and advanced directive on file and was completely aware when she first entered Hospice. She said no feeding tube unless she got uncomfortably hungry and no IV except in the same situation. We were both scared, because we know dying of starvation and dehydration is horrible. I am relieved to report her appetite went away before her ability to eat and she has no indication the lack of fluids bothers her at all. Her kidneys are still working, even without any liquids other than the Morphine. Her eyes remain closed, so they aren't drying out and I put Vaseline on her lips if they start to look dry, but that doesn't appear to be a problem either. I suppose if a perfectly healthy person were suddenly deprived of food and water it would be absolutely horrible, but for anyone contemplating feeding tubes and IVs for themselves or a loved one, the answer is simpler than I'd ever imagined. If the patient has an appetite, feed them. If they are thirsty, give them water with a syringe or an IV, but it is most likely by the time they can't eat and drink on their own (barring traumatic spinal cord injury, of course), they won't want to. The body's metabolism slows so much in the final stages, it just doesn't crave anything anymore. I hope this sets at least someone's mind at ease.

The upshot of it all is that Mom won't linger indefinitely. The lack of water will take her, but it is in a race with her weak heart giving out. It isn't quite as quick or easy as euthanasia, but at least it is reassuring to know the end is truly nigh.

As for the euthanasia debate . . . I find it quite interesting that often, people don't seem to consider the relationship of their opinions on abortion, capital punishment, and euthanasia. I would never dream to say these concepts are, or should be, directly related, only that they all share a common theme. At worst, they are a means to take a human life which may be innocent, healthy, and have the potential to become a productive member of our society. At best, they serve to remove someone who may not be capable of any reasonable quality of life, may be a threat to the well-being of themselves or others, and/or cannot or will not contribute to our society as a whole.

I find it very telling when someone gives a bumper-sticker response when they are asked their opinions on such controversial subjects. People who are always justifying their personal values according to the fear of "opening the door" or giving an inch so the "other side" can take a mile. I like to believe the majority of people, regardless of upbringing, political and religious, are thinking human beings. People who can see individual situations vary and that should be accounted for, but the concept of regulating for the masses according to the personal experiences of a minority is extremely bad for society. The idea of "no one left behind" is certainly noble and most definitely should be the goal of the individual, but a whole society practicing this is treading on very thin ice.

Sure, you can take a skeleton crew on the Enterprise to save the life of a friend, but I'll bet folks would have been pretty pissed if Kirk had risked the safety of the entire Federation of Planets just to recover Spock. From a societal perspective, the needs of the many really do outweigh the needs of the few. On a personal level, each and every individual needs to be educated and have the flexibility to accept when a situation changes. Only then can the needs of the many take a backset to the needs of the few . . . or the one.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Wed Feb 25, 2015 4:51 am

she's gone.
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Re: Caregiving - or - Russian nesting dolls

Postby neildarkstar » Wed Feb 25, 2015 8:32 am

Again, condolences. You will all be in my prayers...
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Re: Caregiving - or - Russian nesting dolls

Postby Adul » Wed Feb 25, 2015 10:29 am

My condolences, Elaura. My thoughts are with you guys.
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