If I had it all to do over again, here's what I would do differently...
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.
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
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♡♡♡
So we should take good care of ourselves but when its time to go we will go. IMO
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 .
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].
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!