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I have been thinking lately about discussions on here and how many caregivers are often sleep deprived, not eating well, not going to the doctor as often as they should to take care of themselves and how many have the stress of a horrible financial situation. After being hinted at (strongly) by a couple of people concerning my FIL and where he will go after rehab time is up (will it be our house, hint, hint and why not) that got me to thinking about how many people are mislead, guilted and outright lied to about caregiving and what it will entail.

I saw my mom go through this off and on for 15 years, so I already knew the sacrifice it takes but I have been thinking about the people out there who honestly had no clue what they were getting into.

I have told nurses and family members that my FIL needs a team of people to help him. That there is a reason nursing homes and hospitals do not let one nurse stay 24/7 and that people need to get some sleep, eat, bathe and have a mental/emotional time out. Needless to say, this is met with a half-hearted grunt.

I am really beginning to think that when elderly patients go into doctors visits, the doctor (or nurse collecting the info) needs to ask: who is taking care of you, do they have help, how often? If you are in charge of giving someone medication and you are sleepy, sick, etc. will you make a mistake? Considering 30% of caregivers die before those they are caregiving for, is it healthy for the caregivers? I would guess not.

I remember a gentleman I knew whose dad had jaw cancer. He was slightly upset because the family wanted to take care of his dad after his hospitalization but he had to go to a nursing home for recovery. The reason? Insurance would not pay for the additional required IV treatment if he did not.

I am wondering if in some of these extreme caregiving conditions, if it would be better off for the seniors and their caregivers if there was no option to stay at home. If seniors are told: "no, there is no running one person into the ground, affecting their health and finances. The only way for insurance to continue to pay your medications, treatments and office visits is if you are in a facility. If you cannot pay, you will be given the option of Medicaid."

I know there would be every civil rights group screaming something at the top of their lungs, lawsuits a plently, etc. but in most cases, wouldn't it be the safest thing to do for both parties involved? Your thoughts?

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I know this is an odd question and I am thankfully an only child but why do people with crappy siblings give them reports on their parents? If I had sole responsiblity of my parent (financially, emotionally, mentally) and I had a sibling that didn't care, I wouldn't contact them. I would unlist my number so they could not call me and I would return any mail back to sender.
If my parent passed away, I would then obtain an attorney to send them the notice.
My uncle treated my mom that way. If she passes before me, him or his family will not be notified.
Life is too short to waste on certain people.
If mom or dad insist on having contact, pack their bags, attach a note like they do for kids and put them on a plane and tell the sibling: "go to the airport, our parent is on their way,". I had to do something similiar for my grandfather. My mom was caregiver for both my grandparents and she got very sick and needed to be hospitalized. My granddad was supposed to go back to his home via my uncle and then he called and cancelled. I finally called my uncle and my grandmother and told them, "if he calls you, ignore it. Come anyway, you all are killing my mom. Pick him up by that weekend, and I mean it." He was picked up and my mom lived.
If a parent insists on phone contact with their less-than wonderful child, put a phone in their room and let them talk away. Just stay out of the conversations.
I honestly think a huge portion of caregivers suffer from Stockholm Syndrome and are convinced they must emtomb themselves with their parents like the slaves who were walled up with a dead pharoah. This is one of the main reasons that many times one person struggles to do it all and yes, maybe a doctor should step in to force the hands of adult children who just can't see it or the children refuse to agree to share responsibilities if they are able.
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Well at least your brother is a little bit smart, not wanting to do what you do! You have a hard life. God bless you.
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WELL MY MOM IS 87 YRS OLD, SHE CANNOT WALK BECAUSE OF A STROKE SHE HAD WHICH SHE DIDNT NO AT THE TIME SHE THOUGHT IT WAS A SEIZURE SHE HAD BUT WE FOUND OUT LATER ON IT WAS A STROKE, SHE KEEPS FALLING SHE HAS NO BALANCE ON HER FEET, THEN SHE BUSTED A BLOOD VESSEL IN HER BRAIN, THAT IS WHY SHE HAS BEEN IN AND OUT OF NURSING HOMES AND HOSPITALS, THEN THIS LAST FALL SHE HAD SHE BROKE 2 CERVICAL BONES IN HER KNECK 1 & 2 TOP OF SPINE BY THE HEAD. MY DAD HAS PASSED ON IN 2004, AND I DO HAVE POA AND SHE HAS LIVING WILL,AND A TRUST. WE ARE LIVING WITH HER AND WE DO WANT TO KEEP THE HOUSE THE HOUSE WAS PROMISED TO ME ONCE SHE PASSES ON IT IS IN THE WILL THAT SHE HAD MADE UP WITH HER ATTORNEY AND HE IS TRYING FOR ME TO KEEP THE HOUSE ALSO. AND I DO NOT NO WHAT TO DO ABOUT ALL OF THIS, NO FAMILY WANTS TO GET INVOLVED BUT IF I DO SOMETHING THAT THEY DO NOT LIKE THEN I GET A FLASH BACK FROM THEM AND I KEEP ON TELLING THEM IF THEY DO NOT LIKE WHAT I DO THEN CHIP IN AND HELP AND THERE ANSWER IS ALWAYS I DO NOT WANT TO GET INVOLVED AND MY BROTHER HE IS IN NEW YORK AND IM HERE IN FLORIDA AND HE KEEPS TELLING ME THAT HE CANNOT COME DOWN HERE TO HELP, THEN I TELL HIM WELL THEN YOU TAKE MOM AND HIS ANSWER IS I DO NOT WANT TO GO THROUGH WHAT YOU ARE GOING THROUGH.
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mwah - many of us have been in your situation, myself included, but you need to state what you want: just support, ideas solutions or what?

If you want us to comment on the situation, we need more information. How old is mom? What's been wrong with her that she's been in and out of the hospital 6 times? Has dad passed on? Do YOU have powers of attorney (which, or if not, who has them?). Is there a will, a trust? Are you living in your mother's home with your husband and do you have children also? Do you depend upon living in the home? Plez answer these questions and include any other information you think may be relevant. If you just wanted to vent, that's OK too.
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I HAVE BEEN TAKING CARE OF MY MOM FROM DAY ONE, AND IT IS VERY TIRESOME, AND STRESSFUL, BUT NO ONE IN MY FAMILY WANTS TO HELP OUT AND SHE DOES NOT WANT TO GO INTO A NURSING HOME ANYMORE, SHE HAS BEEN IN AND OUT OF THEM 6 TIMES, AND EVERYTIME SHE COMES OUT I AM THE ONE THAT HAS TO TAKE CARE OF HER, MY HUSBAND WORKS ALL DAY SO HE AINT HOME HE IS HOME AT NIGHT AND HE HELPS ME OUT, AND WHEN I TELL MY FAMILY THAT I MAY PUT HER INTO ANOTHER NURSING HOME ALL HELL BREAKS OUT, THEN THEY TELL ME I CANNOT DO THAT TO HER, AND IF I DO THAT THEN THEY TELL ME I HAVE TO MOVE OUT OF THE HOUSE BECAUSE SHE IS NOT THERE.
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Excellent question, Joyce. Again, enough money seems to be the answer to a lot of these problems, such as caregiving...the subject of this site.
If you can afford outside help, and I mean high quality, trustworthy help, then go ahead and pay for it. It will relieve you and the "team" of 24/7 caregiving. Good luck.
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Thank you for all the responses. I am an only child and have seen what many of you have mentioned about siblings leaving it to one child to handle.
I have also seen so many seniors in my family and extended family who had very few plans. They relied so much on one person and let their other children slide. My personal experience with this happened when I was 14. My grandmother was staying with us and my mom was helping her. Then my mom became extremly sick. My grandmother was one of those individuals who required the promise of "never going into a nusring home." (I have learned as I got older, this proclamation doesn't work for everyone equally).
My mom was hospitalized and found to have renal failure. She had close to 50 pounds of fluid, her bowles had locked up, menstrual cycle stopped, she was jauniced, vomiting and just about dead.
I called my grandfather (who was one of those individuals who was OLD from the time he was 60 on and therefore couldn't have any real pressure on him) and told him what was going on. The response? "Well, I guess it's in your lap now." No mention of him actually taking care of my grandmother or her going to her son's house.
Now, if rules had been in place to actually ask: by the way, who is taking care of your grandmother and if another family member doesn't step up, she goes to a nursing home -- many, many problems would have been taken care of.
I think a lot of caregivers are looking at these situations from purely emotional means. We are conditioned in society to never question financial implications, stress on marriage, job, etc. because it appears as if we have less love for the person who is needing caregiving.
I would never adovacate to stop medications, but that for insurance to pay, the person must be placed into assisted living or a nursing home. Plus if medicare or medicade pays for this. In a nursing home or assited living setting, there are more workers to interact with the patient. Too many abuses have happened with caregivers hired off the street to help the family and even with visiting nurse agencies. We came close to having to get a restraining order against one nurse where my FIL is concerend. No problems with odd nurse behavior at the facility he is at -- one reason because other people are around.
And of couse, elderly patients will want to stay in their homes. But when you have dementia, alzheimers or other serious medical conditions, can you make a clear decision? Can family caregivers actually make a clear decision and look at the larger picture without all the emotion attached? I do not think that most can. Even my own mom could not. She was still doing and doing while she was dying herself. And paying a caregiver does not lessen the wear and tear of stress on the body from doing the job 24/7. That is why I was thinking doctors should be involved for all parties concerned and if there is a nudge to get families to make decisions, then something needs to happen.
I just wanted to give some background on what happened to me growing up, so you all wouldn't think I was coming across as heartless.
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correction...

I chose not to put her in an HMO because I didn't want another layer OF DOCTORS I'D have to deal with.
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Ahhh, Soylent Green, people crackers. Uh huh.

Yes, it IS about being forced vs making a considered choice related to each patient. Even though my aunt had let her supplemental insurance lapse and it was quite costly with all of her newly discovered medical conditions (and where I couldn't get her a new supplemental policy without significant waivers), I CHOSE not to put her in an HMO because I didn't want another layer I've got to have to deal with.

If I had a choice, which I did financially (as my and had some funds) in this case, l would never choose inserting it another layer of bureaucracy in the care of any elderly patient, dementia or otherwise.
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Is it safe or in the best interest of the elderly person to be cared for by one person? No it probably isn't, I know it is not in the best interest of the caregiver to become so worn out and dead dog tired from trying to appease an irrational person all day.

I know you can make mistakes with medications when you are ill or extremely worried. I found out I had gone into renal failure and was wondering if I was going to die and yet I was continuing my mother's care. I then realized that I had switched her morning and night medications. There was nothing life threatening, but what if there had been? That scared the heck out of me!

The problem is I do not want to be FORCED to put my parent into a nursing home nor do I want to be FORCED into a nursing home at any age. It becomes nothing more than warehousing our old and sick. I have been in several of them as a visitor and it is extremely sad and the care is not what it should be. I would rather put a gun to my head and kill myself than to have to live that way and I promised my parents that I would NEVER put them in a nursing home as well.

What does need to happen is that more help be given to those who are giving up their lives to care for their loved ones. It would be far cheaper for our government to pay for additional help than it would ever be to warehouse an elderly person in a nursing home. It would also be nice if we received compensation (which will never happen unless your parent is on Medicaid) or at the least given credit towards Social Security so that when we are 65 we have no income because we have spent the last 20 years caring for sick relatives.

It would also be nice if each child was required to help in the care of the sick/aging parent rather than just leaving it all to one child to handle on their own, unfortunately however they do not want to share in the caring but are willing to share in any inheritance that might come their way.

So, No it probably is not in the best interest of the elderly person or the caregiver to have one person do everything. NO I DO NOT WANT THE GOVERNMENT STEPPING IN AND DEMANDING THAT EVERY SICK/ELDERLY PERSON BE WAREHOUSED OR THEY WILL NOT RECEIVE NEEDED MEDICAL CARE.

I am sorry but it makes me think of the old movie "Soylent Green."

No, No, a million times NO!
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Cheryl166
After reading your post regarding the Joyce's post, i also feel as you do. MY mom is at the NH not because I put her there but because she was to weak to walk from point a to b like she was with a walker before she fell. I visit mom every single day. Yes I have to be realistic to myself her needs are not what I can handle by myself. her sons are not capable and they do not live in the same town. I have gone thru agencies for respite care. But it's just that. They are expensive. My friend was helpful because she enjoyed working with the elderly. She moved. She was a very good help. it doesn't last long. I'm still her daughter and I still will be there but, I just can't do it by myself. There was a time where I would go to her apartment three times a day. Just to take care of her needs. She lived in senior housing and I was her assistant living care person. Up until she could longer make a decision to pull her emergency alarm pendant and preferred to sit in her urine for many hrs. if had her at my house I would not have had any respite care cause I couldn't afford it. private home cost way above what she receives from social security and it does not include medicine, office visits, etc just room and board and food and laundry. I felt guilty every day for the first year,but I feel that shes in a good NH Facility and since I'm her poa, it's my responsibility to make sure they are taking care of her needs, and it's there responsibility to take care of her needs. I'm there every day. Her sister and my friend visits one day a week and that is so helpful for me. Sometimes I do take off some time to visit my daughters and I make sure when I leave that somebody is in townto visit her and extra day and check on her laundry. and recently another friend offered to visit my mom while I was out of town. it's different for everybody. Do the best you can with compassion and unconditional love.
Equinox
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Instead of placing them in a nursing home, how about medicare paying an aide to work 40 or even 20 hours a week for respite care. Paying the 24/7 caregiver would also relieve many problems. Let's concentrate on the caregiver, rather than force elderly (poor) into nursing homes. I would rather die, than be in a nursing home. Even the best are jails, cramped cells, forced to share room, no privacy, horrible tasteless food, warehoused waiting to die.
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Absolutely not.
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Everyone who is a solo caregiver (like myself) needs a backup plan in case they become ill and perhaps a respite of at least a few hours every week. I am lucky enough to have a daughter and four teen grandchildren who will sit long enough for me to go shopping, to the doctor, etc. In case of health problems, I have had to hire agency care for around the clock for only a few days. That is very expensive and Medicare doesn't pay for it. Medicare does pay for home nursing care, speech, occupational and physical therapy, but not for someone to give respite. If the patient is a veteran and in their system, they are eligible for personal care (bathing and light housekeeping) and you can get 30 days per year respite from the VA. Check it out. This is free care and has made my life so much easier.
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Oh .. to answer the actual question, ".. is it really safe.. ?"

I'd say, "duh, no" .. unless you're a drone or a saint, most of us are NOT equipped to handle this 24/7. I'm good at this. I love it. And 5 days of 24/7 puts me at my limit.
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IF there was a screening program in place, when would it be invoked? At 60? 80? 90? After they've shown diminished mental capacity? When it seems obvious that being alone, physically, is a potential life hazard? When and where? At the primary care physician's office visit? After an ER visit?

IF there was a program in place, we should have the choice of providing a 'plan.' Go to a facility or make arrangements for 'appropriate' care in the home (THERE'S a can-o-worms, huh? who decides what is appropriate?).

My first reaction is, "oh, please, no!" I don't want doctors having yet one more opportunity to play gods. And then I think, "oh, great! one more bureaucracy to have to wade through!" And then I think, "well, geez .. if medicaid (or medicare) provided for in-home caregiving the cost savings to the government would be SO much less, it would pay for BETTER care."

Good question.
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one person might be able to babysit an elder but the elder needs a variety where companionship is concerned imo. my mother gets just as tired of my constant oversight as i do of her constant care. fortunately i have bribed and coerced a few other family members to drop in often and act like they give a damn.
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I read in the AARP magazine about a pharmacist who would go to the NH and review patients' medication. He would usually recommend eliminating some of the medication and changing others to safer, cheaper, just as effective alternatives. The patients improved.

There should be a similar service to evaluate a person's caregiving network/system/home to make recommendations to improve life for both the patient and the caregivers. Medicare should cover it. They should also ferret out additional funding sources that are available. The recommendations should be confidential, except for extreme examples of abuse, to keep the bureaucrats from regulating how much TV an elder can watch. They should even make recommendations for contributions from unwilling family members! They should not be connected with local NH, visiting nurse or home care agencies, to prevent conflict of interest.

Everybody agrees that Medicaid should pay more to save money by funding more services to allow patients to remain in their homes longer. We just have to sell a few bombers to fund it.

I can see problem with this, but it could be very helpful.
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There has to be personal choice involved for each circumstance in each patient. Making some kind of rule that people don't get their medication paid for unless they go to a facility kind of reminds me of Newt Gingrich who said there should be no foster child system and it all homeless or parent with children waiting for adoption should be in an orphanage. Feels more like Charles Dickens then Americanism.

And, reading these posts, they certainly is a good we share of cranky seniors but it seems to need a lot of the caretaking stress, piled up on the caretaker, is piled thusly by siblings and other family members who don't want to participate in the caretaking but who want to have control of the dollars. I don't think the sick and/or elderly senior should be penalized for an uncaring extended family, especially if they will experience severe consternation by not being able to stay in their home as long as it is reasonable (and granted that some states past that time).
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I think you hit the nail on the head--at least for me. I just don't have the emotional nor physical stamina to be taking care of Mom day after day. People can think it is selfish but it is being realistic. All you have to do is read some of the postings here to know that. I can watch out for her make sure she is being taken care of, just can't do it myself.
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