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My eldercare journeys are over now. But looking back, here's what I would do differently. Maybe this will help someone. And help us all as we think about our own aging, and what's needed at each changing stage.

#1 I would insist on getting the hospital bed, and wheel chair, before they were "needed." Because when the elder person gets pneumonia, or flu, or anything that weakens and incapacitates them, suddenly there you are, with the necessity to move an adult person, and that equipment is what you need to save your back!
#2 I would buy our own wheelchair for her to have at rehab when she first went to the nursing facility with pneumonia. Because that's why she got pressure sores on the outside of her thigh -- their wheelchair they sat her in was too tight!
#3 I would take training in how to wash and diaper a prone person, before that skill was needed.
#4 I would talk about the paranoia and irrationality that can come with pneumonia, and bladder infections (if I had only known!), and make agreements ahead of time. And set up calming routines of music and words.
#5 I would study bladder and bowel issues in elderly, so I could know when something was an emergency or not.
#6 I would find a doctor who would come to the house.

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I am grateful for your help and advice. I'm also grateful to meet you and so many other caregivers. We're not alone, we had not met yet (like Michael Buble's song). Keep on posting, it's like a lifesaver in the troubled waters of the ocean at night.................yep, some days are daytime, and others pure night, no moon.
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Mulata88, thank you for your kind words! And Bless YOU for your care of your Mom!

I think most elders just cling to the hope that they are going to die in their sleep some time. They don't want to think about or plan for the CASCADE of EVENTS that happen -- often in the last 6 to 24 months of life. Maybe start with bringing in a bath aide. Someone who can do a little cream-and-massage after the bath or shower to make it pleasant.

You can also just hire helpers on your own -- maybe someone to do a manicure, or come to the house to fix her hair.

Someone to come in and clean her room and bathroom twice a month. Get her used to other people helping her. To keep costs low, you can get some helpers-in-training, just hire them on your own, you don't have to go through agencies. Because bringing in agencies has its own difficulties and restrictions too -- sometimes imposed on you!

I know -- people have safety concerns and liability issues. But the best helpers I had were the college students I hired on my own. The "professionals" were cold, perfunctory, and made mistakes.

If you can't have the talk with her, there are social workers, or a resources coordinator from your local senior center, or find "council on aging' in your area. They can talk with her and help her think about how her needs WILL be increasing, and it's better to get used to having the help now, while she's still independent and in good mental state.

Or, if you don't want to bring in the agencies, you can have her watch DVDs and YouTube videos considering these things.

I think if you click on my profile, you can see what I've written in other threads.

I just wrote one on realizing that perhaps if I had held back in the beginning of her decline, I wouldn't have "enabled" an unsustainable situation (ie: staying in a house with serious accessibility issues, lots of stairs, etc.)

Thank you! You've inspired me to continue on with writing a book. Mine would be less of a "how to" though, and just more about my own experience.

Meanwhile -- if you find anything that makes you, or Mother, smile -- amplify it, bring MORE of it into your lives. Fun, enjoyment, enthusiasm, appreciation of beauty, humor -- these can be found like sparkling nuggets scattered throughout every, yes EVERY experience of life.

Meanwhile -- if you find something
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Dear Singing,
I wish you would write more and all you can get down in writing to help me prepare for the future with my mom.
You've "been there and done that" and now I need to tap into your world of wisdom.
I am the only caregiver. Mom's very shy, old fashioned way. Laugh you guys, but mom doesn't let me come in her room if she is wearing A FULL SLIP, much less anything less.............she wears dentures.........well, I have yet to see her without them in place!
She ran into a stomach, well bluntly said, constipation to the max.....so her doctor, seeing the X ray, tells me to do a fleet enema.............??? Mom was so shy, whoah, and I did the fleet, worked fine, and make sure that it won't happen again!
Those things you've talked about "sphincters", well, I for one can use all the help I can get.
Another tremendously helpful point you're making is involving other caregivers so that she is used to them, not just me me and me!
Mom is 90.5, does bathe, toilet and eat on her own. No walker, cane, or assistive devices needed (yet).
I (hahaha), gotta laugh, took away her high heels from her closet, one pair at a time, and replaced with a new pair of lower heels, wedges, and sturdier shoes. She's been a long time "fashionista", even b4 the word was invented. To this minute, mom is fully dressed, doesn't own a house robe..................She wears earrings every day, and puts on a little bit of makeup.
Anyway, the issues that are looming ahead are probably less scary than what I allow my imagination to visualize.
Help me and others who aren't there yet.... Thank you, and thank this blog♡♡♡
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I think when your number is up itsup. You hear stories of people dying in the most bizarre ways. Like a woman jogging gets hit by a falling branch and dies. Or I heard a story once of a man who died getting hit by a wheel that had come off a bus. I think their numbers were up that day. If the branch or wheel hadn't killed them something else would of.

So we should take good care of ourselves but when its time to go we will go. IMO
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my dad died at the age of 72 from squeaky clean living . how messed up is that ?
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katiekat2009,
passing away shortly after a major stroke could be the best case scenario . your parent was messed up badly or she wouldnt have been elegible for hospice care .
my mother died from dementia and heart failure -- without much physical pain . had she lived longer , COPD and kidney cancer probably had much worse to offer .
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freqflyer, you are right. Sometimes in "helping" we are actually "enabling" an unsustainable choice or condition. If I had helped less in the beginning of her decline, she would have paid for more services (lawn care, home repair, meals, even laundry) and then she would have had less money to lend and spend on other family members who were not helping at all, and just drained her resources. The more I helped, the less income I could bring in, and the less freedom and financial security I had. I was saving her money by doing all that for her, but the money she was saving was not going to me. In addition, if I had help back and not "enabled" by running up and down the stairs for her, she might have realized that her totally inaccessible house was not going to work for longterm care, and might have agreed to MOVE.
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Everyone just hopes and assumes for themselves that they are going to be independent until they die. If I had it to do over, I would have had my mother pay for other people's assistance, so she would have gotten used to other people helping her, other than just me.
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I would have the conversations with parents and in-laws about what their plans are as they age and need gradually increasing assistance to full blown nursing home. (We would flesh out earlier that there are NO plans - so then we could start getting resources and discussions in place)
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Which is what ended up happening anyway, because the nursing home dislocated the partial hip replacement. (A therapist twisted it). So she had to go through two more surgeries -- one to try to force it back in (unsuccessful) and one to take out the prosthesis.Then I could bring her home again, and she was comfortable for six months until she died.
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If I had it to do over again, I would opt for the girdle stone procedure instead of the partial hip replacement. Because by the time she fell and broke a hip (at 88, while in rehab for infection at the nursing facility) she was not up to the exercise and effort required to make the hip replacement work. Everything would have been easier on her to just take out the broken bone and let her come on home.
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I'm remember more and more, from the years... When she got cataract surgery, the doctor implanted lenses FOR DRIVING DISTANCE. For a woman whose greatest joy in life at that time was serious reading. And she had wisely given up driving. The implanted lenses gave her 20/20 vision, but she had to use adaptive glasses to read, and she never could make them work. It was so difficult, that she lost her joy of reading. So if I had it to do over again (who knew?) I would talk directly to the doctor, telling him that READING is the MAIN GOAL. She should be able to read without glasses, as she did before the surgery.
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I would not let them do a "high enema" (which the hospital calls a 'colonic' but that is NOT what a colonic is) for a supposed bowel blockage/constipation. The emergency room nurse was too aggressive with it, and perforated the lining between her bowel and vagina. Instead, I would use home enemas or if constipation is a regular thing, a colema board, or take her to actual colonics (at natural health clinic) which are much gentler, painless, non messy, easy, and, I believe, more healthy for the colon. For myself, as I age, colonics will be a part of my health maintenance routine, surely!
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freqflyer I can relate! If I had it to do over again, I would have firmly guided my mother into purchasing a duplex with me (and getting her out of a terribly INACCESSIBLE house, BEFORE that long gray-area period -- where no doctor wanted to designate her as incompetant, but growing dementia made it impossible for her to follow-through on decisions, and impossible to budge her out of this house where the bathroom was not wheelchair accessible, stairs everywhere, and it took me years to get a ramp outside...etc..
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Singingway, excellent ideas. I know I was glad I learned all I could about dementia long before my parents had any issues with the disease. It sure helped me coup.

If I had to do it all over again, I would not have enabled my parents to help keep them living in their 3-story single family house. I just couldn't say "no" to all of their request to help.

If I hadn't enabled them, then they would have moved to a retirement community to enjoy their later in life years..... instead of dealing with home ownership, all those darn stairs and falling being in their 90's.... [sigh].
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If I had it to do over, I would:
1. As POA, override her DNR and have them do everything possible. After a major stroke, because of the DNR, she wasn't a candidate for rehab, not eligible to stay in the hospital, but not physically able to return to AL care. Therefore, she went to hospice and died within a week.

2. Would not use inpatient hospice.

3. Would not sign up to be the caregiver to begin with!
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Singing, I am just starting on the road of eldercare. Thank you so much for the advice!
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