Carol Bradley, Thank you for the recommendation of Pioneer Network & Culture Change. That offers some ray of hope by reducing my isolation and confirming my grip on reality. What I have experienced in 5 different facilities/residential care homes in AZ & CA has been an abhorrent nightmare that had I not personally experienced would never have believed. Thank you for hearing me, validating my experience, and pointing me in a different positive direction with a network.

Carol Bradley,It is not just "sad" but a local and national tragedy and a huge shame that scars this nation's fabric. I have tried the local VOLUNTEER Ombudsmen in CA and she/they generally side with the Owner or turn it over to Licensing which is ineffective due to lack of State & County Funding or so they say. Unfortunately, the honorable and sensitive VOLUNTEER Ombudsmen do not last in this corrupt system. So that is a dead end also. My experience with the local Churches and Libraries is they do not perceive the immense and critical problems as something they should be involved in. Personally, the individuals do what they can but they, too, know that is not enough.

I wish I had an answer for you. I've heard that Florida has problems, too. For particular issues at particular facilities, you can work with the ombudsman for that home. You can find that person at www.ltcombudsman.org. You'll need the Zip code of the home.

As far as making a big difference overall, organizations such as the Pioneer Network have been working on this for years. They've made headway, but if a state chooses to ignore culture change in nursing homes, I'm not sure what can be done except complain to your representatives in Congress. Sad, isn't it?
Carol

Carol Bradley, The really disturbing part of this situation is that this seems to be the way the AZ & CA Residential/ Assisted Living wants it to be. I am told by Administrator Students that in FL that there is a similar situation there also. One knowing person alone cannot fight this malevolent corruption based on bottom line profit. The Marketing is slick. The Regulations are not enforced due to lack of County & State Funds. The cutbacks in funding for qualified and honest people to correct this insidious situation needs a celebrity like Oprah to champion it and stay with it. Frontline on PBS did 2 one hour investigative reporting TV Programs on the subject called "Living And Dieing In Assisted Living Facilities" and "Post Mortem". Nothing has come of them that I am aware of. In "Post Mortem" the reporter even had one of the doctors admit that in LA County there is an actual HONOR CODE enforced where employees do not report other employees abuse of physically frail memory care patients. I have actually witnessed that scenario. It was also reported that only 1 in 3 death by abuse patients/residents in these facilities receive autopsies to determine actual cause of death so the cycle of abusive deaths is far larger than known and continues on because predators are not identified and tried and incarcerated for their abusive crimes. Literally, they are getting away with murder. This entire Industry needs to be further investigated and properly held accountable but HOW??

This is such a disturbing situation. Different areas of the country have vastly different care homes. I was continually amazed at the wonderful people hired by the nursing home where my parents lived. Naturally, some were better at their jobs than others, and a few turned out to be unsuited to the job, but they were quickly terminated. Many of the caregivers had been there 10 or more years. I would love to see this type of care everywhere in the country (and even better care, as the bar for wonderful nursing home care keeps getting higher).

You are right that the general public, religious organizations, and elder care associations need to group together and demand better care. It's tough, however, because most of the time people looking at nursing home care - and their families - are quite desperate for help.

I hope that CA and AZ can get their act together when it comes to nursing home care. The situation you describe shouldn't be tolerated.
Thanks for speaking out,
Carol

Dignity needs to be preserved at all costs for the patient/resident. In most facilities the help is paid next to nothing and they don't even respect themselves so how can they extend that to your beloved family? Many times they don't even speak the same language and are even illegal with no proper paper work or medical or finger print clearances. They are often hostile and resentful. This is a huge problem in the Facilities in CA and AZ that most often goes unreported by the patient/resident with memory loss. It is shameful neglect that needs addressing at the County and State Levels as well as locally. When the cognitively sound patient/resident witnesses neglect and reports it to the immediate Administrator, she/he is most often isolated and evicted under the guise of "we can no longer meet your needs" So the witness must pay for the packing, moving, and unpacking at a different facility where the same problem keeps emerging....These severe issues need light shined on them and appropriate action desperately needs to be taken by local authorities & Churches.....

Hi Phil,
Thanks for your tips on the significance of fecal incontinence. Dignity for the person with incontinence is vital, but so is the health of the caregiver. Sometimes, incontinence, especially fecal incontinence, is the breaking point for home caregivers. I'm glad to know there are people like you to help educate us all.
Carol

Hi Carol,
Faecal incontinence is to me the last taboo subject. Everyone does it but no one talks about Poo. There are many issues that carers have to deal with faeces and urine. Starters the infection risk is huge.
Carers need to see their Doctor to see how to limit the risk of infections.
Dignity for patient and care giver is difficult to maintain especially when incontinence pads are involved.
Other issues are skin integrity is compromised for a person having skin contact with faeces and urine for prolonged periods of time.
UTI (Urine infections ) can become a chronic infection issue if poor hygiene techniques are used.

At the end of the day we need to be open and respectful towards people with incontinence issues. So they can receive the best education on how to deal with incontinence . At inightingale I see faecal incontinence as my mission to keep people out of emergency departments.

Best of Care
Phill

Since I have become the primary caregiver of my 89 soon to be 90 yr young dad I have seen things I never expected to see, but one time while I was fixing breakfast my dad walked thru wearing a heavy coat, and one sock, NO pants or underwear, I looked at him as he was walking out of the kitchen and busted out laughing, I must say that is a sight I will never forget

No need for guilt! Most of us have wondered if our care receivers would out live us, at least from time to time. That's just human. I love dogs and know how hard it can be when they get old. You've really got your hands full.

Do try to take care of yourself. You really should out last them both: )
Carol

Thanks for the welcome...the reddoglives is actually the bane of my existence...Red is my MIL little dog that she cares more about than any living human on earth. She would shove me in front of a fast moving train to save him any day of the week...my husband (her son) included. Red is old, blind, an insulin dependent diabetic, and was never housebroken. Thank goodness we have tile throughout the house except for 1 bedroom. It has taken 3 years for him to finally go outside most of the time. He has to be carried outside at dawn daily around the pool to do his business, then every couple of hours after that. He finds his way back to the door fine but won't find his way out there. I don't know if we trained him or he's trained us. With all the time and energy it takes to care for mom I would run his little behind to the pound in heart beat but she loves him so much that I think she would just give up if anything were to happen to him. It has gotten much better. He has gone up to a week or so with no accidents in the house...a lot better than the 5 or 6 times a day we dealt with for the first 6 months. Being blind he would step in it and track in all over so we ended up mopping most of the house 5 or 6 times a day too. I make jokes about my morning cocktail of pinesol, bleach and fabuloso... Sometimes my attitude suffers quite a bit...been tempted to accidentally on purpose, trip and find out how long the little beast can tread water. My husband feeds him and gives him his shots and who ever finds the mess...mops. Mom got upset and "told" our daughter on me because I get angry with Red when he makes a mess in the house...our daughter told her that's because it's DISGUSTING!!! She stopped telling on me after that. When mom could still get around she would try to hide his little accidents...thereby making the whole thing harder to clean up. At least that part of our lives is easier now. Mom is 91 and her dog is 15...I'm 64 and sometimes feel like they will both out live me...I feel guilty when my attitude starts to slip and pray daily for patience and the ability to speak kindly to her.

Welcome to our community, reddoglives! You have good insight and a terrific attitude, such as making time with your husband for a date night, even if it's at home. Very important.

Many people in this community will relate to these words: "I find the hardest thing to be knowing when to back off and let her handle something versus just taking over and doing it myself, knowing once we cross that threshold she seems quite happy to have someone else do it and stops trying to do anything for herself."

Believe me, you aren't alone. I'd say most of us have struggled with this concept. We want to provide help needed but don't want to encourage our elders to be as independent as possible. It's never easy. You've got friends here so I hope you keep coming back.
Carol

Enjoyed the article...I'm new to the site but have been caring for my mother n law for the last several years. The last year has been the hardest, she was able to take care of her intimate personal needs up till then but no more. I find the hardest thing to be knowing when to back off and let her handle something versus just taking over and doing it myself, knowing once we cross that threshold she seems quite happy to have someone else do it and stops trying to do anything for herself. About the only thing she does on her own is get her food from the plate to her mouth...it is getting to be a messier situation all the time. I cut all her food in little pieces or give her finger food to make it easier but still end up with food all over the table, her lap and the floor. I said something to my husband about it may be time to start feeding her but he's against it and says she will stop trying to do anything if we do...it's just hard to know when to step in. She has always been a very proud and independent woman, and now refuses to go outside the house unless its to her doctors office...my husband and I take turns leaving the house to run errands, and date night is him bringing in take out and renting a movie to watch after she goes to bed. We are trying to make it work the best way that we know how.

This is why so may adult children are reluctant to care for their elderly parents.

My wife's dementia has almost totally erased her short term memory. She often says, "do I have to go," but I frequently insist. Then when we ge home again I ask if she is sorry she went and so far she always says no I am glad. I do this because I feel certain that she benefits from as much social interaction as I can give her.

I always learn so much from reading these posts and the comments.

When my Dad moved in, I noticed by his briefs that he has had a bladder problem long before his cancer. but since I put blame on the cancer + meds it was not so embarassing, and told him, even I wear panty liners, no biggy deal, now he wears male panty liners. whew, saved the furniture and mattress... that was easy to talk about. as far as bathing, I let him wear his briefs, and then after I scrub him, I hand him a soapy wash cloth and say ok, I am going to step out, now you wash where the sun don't shine ok? and we laugh...but I am experiencing a new embarrassing hurdle, and I even asked him, are you experiencing burning when you pee? are you starting to get a rash from the pads, if so, change more often and use the wipes I bought for you, but he said no. I even asked his doctor to check his genitials out, to make sure, all I know is Dad has been reaching into his undies allot lately, and I dunno if he is trying to, I dunno...well you know!!! (blush) I try not to notice but he seems to do it all the time anymore. any suggestions???

I work for a company called Cleanwaste just hearing your stories makes my heart ache for you and your loved ones. It's so hard on everyone involved. I don't know if you have heard of them but we make a product for bedside commodes called the Sani-Bag+ that can make clean up a little easier and more dignified. Take care

You are welcome, Joan. We need practical advice, support, and a few laughs, just to get through the day. That's what this forum is all about (and the articles, of course!)
Take care of yourselves, too - all of you!
Carol

Thank you again, Carol, for your practical viewpoint and advice. It helps a lot!

Blessings,
Joan
Caregiver at Home

I personally have to take care of my almost new Mother-in-law everyday due to her late stage of dementia. She too didn't seem to mind the bathing ladies either, and I think your article pinned that on the head excellently! It was like, 'OK, I'll 'tolerate this since it is a 'medical' need!' EXACTLY! Thank you Lord for the Dept. Of Ageing and Social Services! It has helped a lot with our ever increasing responsiblities. May I add too that things can get worse if varying other viruses or problems occur. Mom has had many. Like reactions to medication, and diets, infections from touching area's or becoming in contact with contaminated clothing, etc. Keep lots of anti-bacterial lotion on hand to keep them clean. Their hands, their face, yourself, and wear lots of gloves! While in and out of the hospital for many falls during her beginning diagnosis, she also had bouts of dehydration, weight loss, etc. Many of these problems caused loose bowels and often constipation. I had to give many enema's, (warm soapy one's help, and they have excellent OTC oil based one's too) that aided her in passing. I found placeing her in the shower on her porta-potty helped, and then I could rinse her off with the shower nozzle. It spared her hundred's of dollars from an emergency run to the hospital and undue embarassment from having nurses and Doctor's coming in and out of her room, etc. (And popsicle sticks do NOT feel good to these eldery individuals!) She had experienced this once before which resulted in a 7 hour visit to the E.R. That was painful to watch too. Maybe my techniques were more gentle, or got I to it sooner, but all things passed without her having to suffer long. And it was so much easier to clean her up! The culprit was apparently medication, and resulted in a huge obstuction about the size of a baseball or grapefruit. Ouch! As she has gotten worse, we've noted more loose stools. This is only becoming more of a problem as she is more bed ridden now. Lack of eating and/or fluids is not the culprit. Dehydration often causes this same problem. Not using her legs has resulted in long term muscle atrophy and an inability to walk to the bathroom. So when we can't place her on the porta-potty she has to use her diapers. Which can during the night build up and leave an unsanitary mess for everyone. They have excellent wipes and pad that enable cleaning much easier! Eating may be a mess, and dementia paitents may forget how to use utensils, but if they must eat with their hands, be sure you clean them immediatedly! They don't realize their touching different serfaces and then their mouth and nose, eyes, etc. Keeping them clean and sanitary is sometimes harder than a 2 year old! Helping to cut very small peices, and using a spoon or helping them eat has helped so much. I find using a spoon to give mom her multidued of pills help. She started 'chewing' her medication a year ago. So explaining these things may not help. They don't know what they are doing. Just spooning the pills into her mouth little by little and then giving her a drink with a straw has ended that problem! She gets them all down perfectly. She was dropping them before, losing them in the bedding, or mixing them in her drink, so this way I know she is getting all her med's and safely. My husband also knows the feeling of embarassment, and I think again, your article was precise in saying for some it's a matter of disrespect. I feel uncomfortable asking him to help dress her, but it has to be done. And you do it out of love! Not for the pat on the back! Mom's grateful, we're grateful, and everyone can sleep a little easier at night knowing she's ate, bathed, and gotten all the things she needed. When you can utilize an outside agency, even Hospice, it really helps! These wonderful epople have off-set so much of the cost's in diapers, pads, lotions for dry, chapped, or diaper-rash skin, gloves, moisture wipes, everything that makes Mom's life more comfortable for us and her! Good luck everyone! Also, find that wonderful spray or something in your near by drug store that is a no rinse wash that cleans and bathes them without the shower! WONDERFUL! I'm using something called 'Sooth & Cool' Free, perineal Wash & No Rinse with Aloe! It's unscented and no dyes. They supply it! (The bathing ladies from Hospice. But I've seen other kinds like this, and their a life-safer for cleaning up a loved one you can't get into a bath or shower!) You just wash & wipe! I love this stuff! thanks!

Thanks for all the feedback, friends. That's what I love about Agingcare - we can all share, and even laugh, occasionally.
Take care of yourselves!
Carol

Aging-Care has been wonderful in giving information in articles, sharing readers’ comments, providing information and much more and THIS article is one of the BEST for me, which is so applicable to my current situation. My husband’s Parkinson’s disease has progressed to where taking him out in public is an act only performed by a brave spouse – me – who must be very mindful of the situation into which I take him. Sometimes I misjudge and it turns out funny and other times it’s just embarrassing and I promise to not try it again. He is not a person easily embarrassed however as he was a very gallant gentleman in our early years together and would not appreciate making others uncomfortable now. With chewing and swallowing being very difficult (what goes down often doesn’t go all the way down and resurfaces to go down the bib) – in all consideration, WHEN we go out to a ‘normal’ restaurant, which has become rare, I ask the hostess to seat us so he is not facing others. We went to a fun Pizza Hut for Christmas Eve. It was cold, snowy, and families were enjoying the restaurant. We sat so that few were near us and our booth faced a ‘not-busy’ salad bar. I thought all was fine and we were not noticeable. As we were finishing (my husband can turn a one hour meal into closing time) – a young man momentarily walked toward us away from his lovely wife and small children and told us that ‘our meal had been taken care of’. Rather than feel embarrassed, I was very thankful and appreciative and hope I am able to pass such caring on to others. This is not the first time something like this has happened for us. I told my husband the truth – it’s because he’s such a good looking man!

Excellent article! I can say for me I am pro active about embarrassment and so called social mishaps. I grew up shy awkward and easily flustered, than, at some point I decided it is no big deal... Unless someone is injured or in pain, so what!? I spilled something, so what, you dribbled your food, so what!? The earth is not gonna split into and implode! Americans have become too too squeamish and perfectionist about things. Maybe the whole world is in a way. We do not like to admit we will make mistakes, mess up, look foolish, drop things, trip, lose face, become embarrassed. We seen to want to maintain a perfect facade of competence and composure at all times and deep down inside we all fear the same things; toilet tissue on the bottom of a shoe, period stain on white panties, food spilled in public, looking incapable of any little thing or major bodily functions, we feel chagrined, humiliated to not be perfect at all times and in all things. We lie to one another every time we deny we have failings, need help, are always in control. Face it, we will all get old, lose abilities, be injured and need assistance, make mistakes, do goofy stuff (yes, even outside of Junior High School) and then the real biggie; eventually die. As for me personally, I declared war on pointless humiliation and shame years ago. There is no shame is spilling food, needing help to walk, wetting one self, dropping things, shaking uncontrollably, or making a mistake! I don't feel a person should have to be humiliated just because something is out of their control and they "mess up". If I am out and I see some one trip, I don't laugh, if someone needs help getting to a door or out of a chair I help them, no biggie, if my grandmother or grandfather spilled something on themselves, I'd clean it up, I don't comment needlessly on it, I don't turn it into an ordeal or major event...on the level of important things, it is just not that important. People should be ashamed when they intentionally harm others not when they spill gravy on their pants.

My Mom kicked me in the head with her knee, by accident, while I was helping her change her pants and Depends. We both laughed so hard. Praise God for a sense of humor during embarrassing times.