Caregiving - or - Russian nesting dolls

Delicate thoughts of a dangerous mind.

Caregiving - or - Russian nesting dolls

Postby Elaura » Sun May 26, 2013 11:17 pm

Jac and I are running a sort of extremely exclusive nursing home. In fact, though we once had five inmates, as of January second of this year, we are down to four.

A little history:

1984: yours truly is almost 14. Dad is diagnosed with terminal brain cancer. Mom's mother (hereafter known as Grammy) moves in to help raise us kids (me 14 and brother 16). He beats the odds and makes it to just five years before requiring another surgery in this interim, he is forced to retire from his federal law enforcement job, but is able to hold down steady employment. After the second surgery, he is unable to drive or work. Shortly thereafter Mom has to quit her job to take care of him.

1988: brother graduates from Junior College and goes into the army. I graduate from highschool and start college at a university less than an hour from home. Soon after, Mom is served an eviction notice. Their bank closed while my dad is in for his second and subsequent third surgeries and all escrow has disappeared in the Great Savings and Loan Crisis. Mom and I move everything we can over the weekend to a rental across town while Grammy and my mom's brother take care of Dad.

~1990: Brother comes home on the "Green to Gold" program and finishes his Bachelor's degree at the same college I'm going to. Mom decides to move the household to a town much closer to the school and finds another rental. I'm still spending a lot of weekends home "helping" but Mom encourages me to get a part-time job and move out. Secretly, Mom and Grammy and Uncle argue about whether or not to ask me to quit school and come home to help take care of Dad regularly. Mom forbids it.

Within the next five years:
  • The government declares Dad dead and erroneously stops his retirement check for six months. When the utilities are shut off for the second time and no one will accept my mother's checks anymore, Senator Breaux steps in and within another three months, all is sorted. Bless that man!
  • Brother graduates from college and moves out to "be all that he can be"
  • I start living with my future ex-husband.
  • Dad declines, he begins to behave like a 220 lb, 6' 2" teenager. Petulant, with mood swings. The long term memory of a grown man, the short term memory of an angry boy.
  • Mom moves the household in another marathon packing session of one weekend to Oklahoma to live closer to Grammy's side of the family. Big family, lots of helpers.

1995: Dad has another surgery, results are poor. Neurosurgeon, now an extremely close friend of the family, regrets the decision to operate. By June, Dad can't walk and mom calls me home. By July, he can't get out of bed. July 12th, Hospice comes to visit the first time. July 13th, he dies.

Okay, if anyone was wondering why I have such a broad understanding of medicine, it's because I've lived in that world for a good bit of my life.

Fast Forward:

[1990s: Ray (to be mentioned next) is treated for skin cancer for the first time.]

~2000: Mom remarries a wonderful man she met on the internet. My step-dad (hereafter referred to as Ray). His lifetime careers included airforce pilot in Viet Nam, math teacher for adults, and lawyer. Mom leaves Grammy and Uncle to go to California to live with Ray. Mom hates California with a passion. They move back. Grammy's health declines. I divorce my husband and eventually move to Oklahoma. Grammy is in and out of the hospital for almost a year and then dies at home. My deepest regret is waking her up that morning to *stick her in the finger* to check her blood sugar. How dumb is that? She got me back, though. Her last words were "Laura, I need . . ."

2003: After several failed relationships and three dead-end jobs (convenience store night clerk, PC sales and repair shop clerk, gaming center manager) I join the US Army. $22,000 enlistment bonus and regular paychecks pay off all credit card debts and after three years, my student loan is paid off. Without Ray and Uncle at home, I never could have had that life. Just before I ship out to Korea, Mom gets these two painful nodules on her elbows that make her look like she traded joints with Popeye.

~ 2005: Mom's health is in decline. Diagnosed with Rheumatoid Arthritis, put on Prednisone, Methotrexate, and Morphine. Since she's not yet on Medicare and when they forced my dad to retire her insurance was canceled, she can't afford any of the new experimental treatments that are $1500 per injection.

~ 2006: My health declines. Reenlistment not probable.

Fast forward:

2008: I'm discharged. Start on unemployment and begin to get my VA claim paperwork in. Spend my $13,000 in savings on taking Mom to visit my Brother and his family.

2009: I meet Jac online in the Spring. We meet in person in November and we're married in December. He moves to Oklahoma in January.

2009-2011: VA claims are finally completely approved. (90% with 100% individual unemployability) Pay, retroactive to the date the paperwork was filed is a nice chunk of change. Allowed Jac and me to buy Mom's house and a nice used truck. Also paid for his move to Oklahoma.

2010: Jac learns what it means to be the caretaker of a caretaker (hence the Russian nesting dolls in the title). He tells everyone, "Laura takes care of her mother and I take care of her." And that IS the truth! Jac hasn't been to a doctor of any sort in ten years. First we get him some new glasses. Then, we get him some health and dental insurance. He is subsequently diagnosed with high blood pressure, arthritis in both knees and his back, and blood in his stool. He also needs two crowns. Unfortunately, his new insurance won't pay for the crowns and we have to take out a loan to pay for them. Fortunately the blood in his stool may be recurring, but not dangerous and we are able to clear it up.

2011: Mom starts getting "difficult". She becomes narcoleptic, and seem always irritated, especially with me. In the Spring, we rent a wheelchair accessible van and I take her back to see my Brother and his family and she sleeps most of the trip. Sometime in October, I discover she's been experiencing rectal bleeding and has been hiding it. When she finally consents to go to the ER, she tells me she feels achy and flu-ey and like if she doesn't get to the hospital, she's going to die.
  • Her actual symptoms: terrible bloody diarrhea, restless legs and a strong tremor. After many hours in the ER and all the usual "elderly patient" tests, they discover she has almost no blood left.
  • She receives three units of blood and several prescriptions, including lasix, but no potassium and a drug called requip for her restless legs at a dosage usually for Parkinson's Disease.
  • One week later, after a slow tapering off of the diarrhea, she's back in the ER. She needs more blood and they admit her again. After misdiagnosing her with Parkinson's Disease on the basis of that one prescription and then giving her the most horrendous rash I have ever seen in my life with a laxative intending to do a colonoscopy the next day, which she declines, turns out she had extremely low potassium from the lasix. After another two units of blood and a shot of potassium, she's ready to come home. No one touches her behind again after I get the rash cleared up - PERIOD.

2012: Ray's cancer has finally caught up with him. His brother died earlier in the year of lung cancer, both of his parents died of cancer and his older sister died of cancer. He hides his pain and fatigue from us, but seems a little moody. When he loses his ability to type, speak and walk in a matter of 24 hours, we take him to the Emergency Room in November. Diagnosis: brain and lung cancer. With heavy steroids, his ability to speak improves and he is able to state his wishes to the hospital staff. Palliative treatment only. He stays in the Hospital for four days while we set up Hospice care and get the house ready for him. He comes home the day after Thanksgiving.

Nov 2012-Jan 2013: Uncle's health declines due to possible stroke (refuses treatment after a fall in the shower and a huge gash in the forehead). Eventually the steroids can't keep up with the swelling in Ray's brain. He develops pneumonia and dies Jan 2nd.

So here we are. I left the Christmas decorations until April. I just couldn't bear to take it all down again. Although none of us hardly had the energy to do it, it was very important to Mom and me that Ray not feel he ruined Christmas, so Jac and I got a tree and I decorated. After Ray passed, I finally started getting my own health appointments set up. It took me a long time to get motivated enough to get myself in the VA healthcare system. It is completely different from the claims department and a lot of it had to be done in person in a town 30 minutes away. When did Jac and I have time to do that?!?

Latest news:
  • I found out a lump in my breast is benign Friday.
  • Saturday, we had to call the ambulance for my mom. Some time during my biopsy adventure, she started bleeding rectally and didn't tell me until we got the results back, so she finally told me and Saturday morning her symptoms were presenting pretty clearly. Well, they did tests and confirmed the hemorrhage, but also discovered her body is keeping up with the blood loss so far. Said nobody would be available to do anything until Tuesday, she didn't need a transfusion yet, so we brought her home, very relived to know she wasn't bleeding out and they would be ready if we had to bring her back.
  • We're still waiting for the results of my latest pap after the doc saw a clearly raw and irritated cervix during my last pelvic exam.

If you've made it this far, you deserve a medal. Please feel free to post your own caregiving stories. Hopefully, we'll be able to use this thread to exchange ideas and maybe help make one another's lives a bit easier?
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Sun May 26, 2013 11:23 pm

Oh, bottom line:

68 year old female invalid. Wheelchair bound, with diabetes, high blood pressure, recurrent internal hemorrhage.
63 year old male with high blood pressure and possible cerebral accident.
42 year old peri-menopausal vet with 90% disability (50% psychological folks, explain much?) Various issues.
39 year old man with high blood pressure, arthritis, and recurrent rectal bleeding.

We all wear glasses, we all are hard of hearing (except Jac).

We also have five dogs and two cats. Two ancient Rhodesian ridgebacks, one four year old doxie, one 2 year old chihuahua, and one 6 month old boston terrier.

I think it's fair to say we all take care of each other, in some small way.
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Re: Caregiving - or - Russian nesting dolls

Postby PiNK PiPER » Mon May 27, 2013 12:49 am

Elaura wrote: Wheelchair bound, with diabetes, high blood pressure, recurrent internal hemorrhage.
high blood pressure and possible cerebral accident.
peri-menopausal
high blood pressure, arthritis, and recurrent rectal bleeding.


Almost sounds like one of those pharmaceutical medication commercials :biggrin:

Elaura wrote:We also have five dogs and two cats. Two ancient Rhodesian ridgebacks, one four year old doxie, one 2 year old chihuahua, and one 6 month old boston terrier.


No flappin way!!!!!!!!! I grew up with a Rhodesian ridgeback named Gunner. He was amazing. As a kid I used to love to see his fur stand up. They are such good looking dogs. You should make a pet thread where we can post pics of our pets :chinscratch:

I have a black male Lab purebred 4 years old named Murphy now although my dad kinda adopted him from me. My dad is semi retired because of health reasons and my eldest brother and I run the family business so he comes to my place and takes the dog during the day most of the time and well... they don't bring him back!!!
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Re: Caregiving - or - Russian nesting dolls

Postby neildarkstar » Mon May 27, 2013 3:32 am

Okay, this could be fun... or something.

For me, i barely remember the start. I was perhaps 5 when doctors informed my mother that I would be crippled by he time I was a teenager, due to deformities in my feet. Thus begins endless, fruitless visits with doctors who all agree.

I developed issues with pneumonia, and was hospitalized several times with it before I turned 8. Sometime in there, I had chicken pox and developed a heart murmur, and doctors informed my mother that my life expectancy wasn't all that great.

When I was 9 two things of interest happened. First I had a head-on collision with a very large 10 year old while paying basketball, and I collapsed right there on the gym floor. A local doctor of the good 'ol boy stripe pronounces me dead a few minutes later. A few minutes after that, just to embarrass him, I sat up and asked him what all the fuss was about. I was not taken to a doctor or hospital, because I was obviously fine, and had presumably just had the wind knocked out of me. That doc was scratching his head for the rest of the time he was there.

The other thing of interest was my first IQ test, and assorted results. They made me take the test twice, because up to that point my teachers had all listed me as being a bit "slow". The IQ test put me at 137, which made no sense given my poor scholastic performance. So I retook the test with similar results.

While searching for reasons, somebody finally noticed I was nearsighted in the extreme. Since everything was taught using a blackboard that I couldn't see, everything I learned had been by guess or by golly, and what I knew I had basically taught myself. I had been nearly blind for all my life, and I just thought everybody saw that way. New glasses changed my life.

In 7th grade, I was diagnosed with chronic walking pneumonia, but on the bright side, my heart murmur was no longer detectable.

The following year, doctors informed my mother that I had some kind of back deformity, and that I would be wheel-chair bound before I graduated high school. Another round of doctors ensued, with the result that I ended up in a steel back brace which I was to wear for the rest of my life.

After a year and a little more maybe, I was sitting on my bed when I realized that I could barely sit up without that brace. That was not to be tolerated, so I took off the brace and threw it into a closet where it resided for some 15 years. I was not crippled by either feet or back and by the time I should have graduated high school, I was working at a mill making furniture for Sears with a wife and a nine month old son.

Fast forward here, and after a wild and healthy life without visiting doctors other than rarely, I learned my mother was in dire straights. She had been diagnosed as manic depressive, and my step-dad had divorced her. I quit a high paying job in advertising (working for a well-known mafia crime family, actually), so that I could go home and take care of my mother.

That was 1992, and really she was healthy, just more than a bit looney-tunes. We had ongoing episodes with people who weren't really there, prowlers in the night with flashlights that were actually neighbors porch lights, and that sort of thing. We had to hide her pistol...

In 1996, I walked into the bathroom and dropped dead. A Sudden Death Syndrome, and at the hospital the doctors declared me brain dead. At first my wife and daughter wouldn't let them quit, but eventually the docs stopped trying to keep me alive. Then to their chagrin, I refused to die. I stayed unconscious for a day, then I woke up with a Catholic priest at my bedside. He was only there because he wanted to know if I saw anything while I was dead.

I just laughed like a maniac, and told him karma would get him...

The doctors informed my family that I had suffered brain damage, and that I would have to go to a special school to learn things like feeding myself. After a day of nurses feeding me, I grabbed the spoon and told them I'd do it myself.

Subsequent tests on entering college indicated that there was indeed brain damage, my IQ had fallen to 134. :) In reality though, my short term memory had been affected, and is an ongoing issue. I suffer from preoccupation with the hereafter. Wherever I go, I'm always wondering what the hell I'm here after.

Memory issues and all, I managed to get two degrees (some 10 credits short of a 3rd) and hold down a job in IT while continuing to care for my mom until she passed in 2010 at age 99.

Shortly after my mother died, my wife was diagnosed with COPD that included end-stage emphysema, and her prognosis was death within a couple of years.

She's on oxygen, and incapable of walking more than about 10 feet. She really can't do anything much more than dress herself (if the clothes are brought to her). She had a heart attack in 1993, and because of the severity of the defibrillation has had issues with incontinence every since.

The state was willing to pay a caregiver to help her for some 20 hours a week, and after a year of half-assed care from them, I quit my job with the city to care for her. The state wouldn't pay me to care for her, and indeed, expected me to compensate them for the caregiver, so we got a divorce.

I now work as her caregiver. I wouldn't have gone that route, but medical and associated bills had left us with nothing, so you do what you must, eh? Anyway, in one sense or another I've been a caregiver since 1992.

I'd worked as a psychiatric aide in a mental institution for 5 years in the last half of the '70s, and had been the recipient of fairly good OJT in health care, pharmacology, and first aid, not to mention dealing with various mental disorders so I was perhaps better prepared than most to be a caregiver.

My wife (we're divorced, but she's still my wife, eh?) is nearly entirely helpless so I do the cooking, cleaning, laundry, shopping, manage her oxygen, get her drinks and goodies, and bathe her. I manage her wheelchair and transportation to various doctors, and now she's facing a lung transplant so transport is not a minor thing at this point. It's a long way to Seattle...

Out of all of that, the only thing I know for sure is, never believe a doctor bearing grim predictions. They know medicine, but they don't know people. They don't understand the power one has over their own fate due to mental toughness and sheer stubbornness.

The other day I was trying to move some shelves loaded with canned goods, and my wife informed me that I can't do things like that anymore. I laughed at her and told her I can do any damned thing I want to, I just have to be willing to bear the pain that follows... and it only hurts 'till it quits.

Then I moved the damned shelves...
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Mon May 27, 2013 9:39 am

Wow! Okay, I don't mean to sound weird or morbid, but that was an exciting read, Neil! It was more than I'd hoped for when I started this thread. There are a few more parallels in our lives than just Rhodies, I can assure you.

I too was considered slow and ended up with a high IQ, which has dropped, but in my case, I think it dropped *because* of college. :shrug:
I think it's very shrewd of you and your wife to get that divorce. Mom and Dad were too stubborn and, although it wouldn't have made a difference during the S&L thing, it would have made a helluva lot of difference afterwards.

I, or rather maybe Jac, might pick your brain about your adventured with mental patients, as I can get a bit mental sometimes, you know? :meshoot: We also had to hide guns from my Dad and Ray, not because they were seeing things, but just because we had no idea which way their brain tumors would go.

Thanks so much for sharing your experiences. I don't know about anyone else, but it helps to know a little bit about what's going on in the life of people you talk to almost every day.

Jac and I are going to take some pictures of our animals and get that pet thread started. I actually went to bed thinking about doing that very thing!
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Re: Caregiving - or - Russian nesting dolls

Postby neildarkstar » Mon May 27, 2013 9:49 am

:biggrin: I think you merged PiNK PiPER's post with mine though. I've had a number of dogs, but no Rhodies, eh? We have one big stupid dog (a Heinz 57 variety), and four or five cats, depending on how you look at it.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Mon May 27, 2013 9:59 am

I did! See what I mean about mental?

My apologies to you both. Thanks for posting, PP. You guys don't forget to post in the upcoming pet thread. Or start it yourselves if you have pictures handy. We still have to locate our digital camera and its cord.
Last edited by Elaura on Mon May 27, 2013 10:00 am, edited 1 time in total.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Sun Sep 01, 2013 1:23 pm

So, little update here. My health has improved. Biopsy showed no cancer and pap was clear.

The situation with my uncle continued to deteriorate until he cut his own throat with a pocket knife. Luckily, though he nicked his carotid, it wasn't fatal and he went straight into therapy. He's home now and continuing his therapy and things are smooth for now. It's amazing how comfortable life becomes when the people in your life finally see and acknowledge their weaknesses and limitations, not to mention your own.

Indeed, Mom finally admitted she is a functional paraplegic, almost quadriplegic at times and my uncle has realized he's officially a senior citizen and he needs to stop treating his body like he's still in his twenties. Addictions aside, he can't mow three acres in a day anymore.

We had to have one of our last two Rhodies put to sleep this summer. She developed osteosarcoma (bone cancer) and went from fine to barely able to move in less than a month. However, we also gained a half Boston Bulldog who wandered up our street and he brings laughter to all of our lives on a daily, almost hourly basis. He'd fitting into the pack quite well.

Our half-doxie has adopted my mom as her pet human and that suits both of them right down to the ground and means (thankfully) that Jac and I only have to share our bed with two 14 pound dogs instead of two 14 pounders and a 25 pound dachshund. I tell you, when you have nearly fifty pound of dead weight on your blankets, you might as well get used to freezing your ass off.

So, what was the point of this thread again? Ah yes, caregiving. I've found the most important aspect of it is not the patient accepting his/her limitations, but the caregiver(s) accepting theirs. Once you step back for a moment and see what you can and cannot do physically and what you are and are not comfortably qualified to do, you can begin to work with your limits instead of fighting them.

Now that mom has admitted there will be a time in the future she may not be able to stand long enough to transfer from bed to wheelchair, we have gotten a hydraulic lift, because I am able to acknowledge I can't safely move her myself. When I finally admitted I could do no more for my uncle, he got bad enough that I could call for "mandatory" assistance.

Jac and I can talk about what comes next without feeling at a loss and that's nice.
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Re: Caregiving - or - Russian nesting dolls

Postby Elaura » Sat Feb 07, 2015 9:45 pm

So, we've come to "what comes next". Mom's health took a turn for the worse back in late December and we've entered the next stage of her care. Even though she was up to date on all of her vaccinations and the only time she's exposed to other people is through us and at her doctor's office, she got "something".

The flu, a cold, I don't know, but it gave her a bad cough. The cough, combined with the inactivity and the loss of appetite seems to have caused stroke-like symptoms as well as an abdominal bleed. She's also lost weight and is now 114 pounds and hardly able to pull herself upright in bed. She's told me she expects to die within the month and she's not afraid. Neither am I; she made it to 70 and her last few years have been rotten sprinkled with good memories and her "good days" have come much fewer and farther between.

She's generally happy, even when she's semi-lucid. Truthfully, if we had Hospice, i wouldn't have a thing to complain about, but she's still worried about me as a Mom would be. I'm going to have to make some arrangements on Monday. Contact the Cremation service we used for my stepdad. Call Hospice and see what can be done. Her downturn has happened since her last doctor's appointment and she is no longer able to leave her bedroom, let alone the house.

If you don't get why we don't just call an ambulance, here's why: she wants to die at home. She doesn't want to spend any of her last days enduring IVs, blood tests, catheters, or any of the other diseases she might acquire there that would make her time that much more fun. She's also not interested in extending her life. As far as we're concerned, unless she needs IV painkillers, she's fine where she is.

At home, she can smoke, eat when and what she wants, and have her medicine on time or even up to an hour early and NEVER has to wait for it. I also never wake her up to give it to her, unless it's been more than thirty minutes past her time. What I do, that hospital nurses can't, is start watching for her to wake up an hour before time and if she does, give her her medicine then. Mom doesn't even have to wait the time it would take for a nurse to respond to a call button if she needs an extra pain pill.

With her at home, I can take moments like this, in my own room, with my husband, while she's sleeping comfortably. We have a baby monitor, so all she has to do is call my name and I'm there in the time it takes me to walk from our room to hers. When I do sleep, I can do it in my own bed, even if Jac and I aren't sleeping at the same time, he's usually right next to me at his computer, or moving from room to room around me and I sleep better knowing if Mom asks for me, I can be right there.

Sounds like we have it all under control, right? Well, meanwhile, back at the farm, my uncle has been drunk for three days running, now. I've gained 20 pounds, bringing me to within ten pounds of my heaviest: 220 pounds. Yesterday morning, I had to wake Jac to take our dachshund to the vet. She and the lab got in a fight and doxies NEVER back down. Fortunately, it was just a bloody nose and not a punctured vessel in her neck, but doxies have long noses and there was a LOT of blood for me to clean up while they were gone. Every time she breathed out to clear her nose, it made me and everything around her look like the aftermath of a Kennedy soirée. I had flashbacks of cleaning up after my uncle's suicide attempt, but, in truth, the dachshund bled a lot more.

In addition, I've allowed one of my mood stabilizers to run out, my IBS had decided I need a bigger asshole, my right elbow has decided to join my right shoulder as the most painful joints in my body, and I have one of those headaches that just sits at my left temple and pokes my eyeball with a red-hot needle every few minutes.

Moving right along, Jac's health issues haven't lessened and a couple, which he cannot easily see or reach have gotten farther than they ever have since we've been married, because I didn't notice and he didn't want to put more on my plate. Bill collectors are calling us daily. The waste collections and telephone have already been shut off and canceled; we now use Vonage and burn our trash. Jac's been handling everything, he tried every internet company in the county so we could get out from under Verizon, but nobody could get a signal and satellite would take away the only entertainment we have: co-op gaming. So, in the end, he backed our bandwidth back to 20 gigs per month and had my cellphone shut off.

You see, we've been behind since our mortgage fell through after a city appraiser said our $250,000 house was worth less than $70,000. His comps weren't anything like our house and were even in the wrong county. He said our brand new wiring and plumbing were original, cut an entire room out of our square-footage, said we only had three bedrooms instead of four, and ignored the fact we'd just finished a custom kitchen renovation. Let's just say we've been buying groceries at Amazon because that's the only credit card with any room on it, or it was, anyway. Fortunately, our local bank has a special program for folks who can't pay off they're bounce protection within the agreed on time, but, of course, we lost the privilege.

So, why am I baring all of our deepest, darkest secrets to strangers and friends we've never seen face-to-face? Why the gory details? Well, it isn't for sympathy, pity, or an appeal for help or money. It's so anyone else in the world who has problems similar to ours will see they aren't the only ones. I know less than 10% of the people on this planet have what we take for granted. We have plenty of room, food, water, heat, TV and internet. We have access to the best medical care in the world and it's never more than three numbers away. We have indoor plumbing and even though we don't agree with our government, we aren't afraid of it.

Basically, I want people to know we're just fine. We have our troubles, just like everyone else, less than some, more than others, but we're OK. I hope anyone who reads this will be able to get some perspective on their own lives and if you come to understand the Lord and Lady of Wolflore a little better, then that's a bonus!

God Bless.
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Re: Caregiving - or - Russian nesting dolls

Postby Adul » Sat Feb 07, 2015 10:51 pm

I'm really sorry to hear all that Elaura, all of that sucks big time. It's certainly true that we humans can worry about the pettiest of things. Even if our lives are great we find things to bitch about. (Of course, I'm not talking about your situation.)

I understand why your mother opted to stay at home. I've had some loved ones in their later years spend months in hospitals and it can truly erode someone's dignity and humanity to a point where you find almost nothing left of the person in their own living body.
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