Memory Care, Assisted Living & Nursing Home Bashing
Many of us have our LOVED ONES living in Memory Care, Assisted Living or Nursing Homes all across the world. There are many reasons for it, too, most often because their care needs far exceed our abilities and they require a team of 24/7 caregivers at their disposal versus one single human being to tend to their myriad of chronic needs.
We should not, and do not, need to explain or justify our decisions to all the haters and bashers out there who love to tell us we 'owe' our parents for giving birth to us! That we should sacrifice our lives for them and convert our homes into hospitals! Tear down walls and stairs and build ramps and install cameras and baby monitors. Bring in hoards of adult briefs and wipes, lay down black rugs in front of doorways for those with dementia so they'll think it's a 'hole' and not run out into the night & get lost! Lock up chemicals under the sinks and unplug appliances so our mothers don't get electrocuted! Shut off the gas, empty out the refrigerator so dad doesn't eat himself up to 500 lbs after forgetting he's already eaten 5 minutes ago 30 times in a row!
Some are able to do these things with no problem. Some have the funds and the ability to quit their jobs and devote their lives to full time care giving. To stop going out for their OWN doctor appointments even so they can stay home 24/7 so dad won't fall and get hurt, even though he may fall and get hurt ANYWAY, because such a thing is not preventable. But that's another topic for another day.
Whatever we choose to do about caring for our loved one is FINE. We should never be judged or shamed for placing our loved one in Assisted Living, Memory Care or Skilled Nursing. We should not have to explain why we made that decision, or justify it to anyone, least of all someone bashing our decision on this FORUM! And we're seeing more & more & more of it lately! Day in and day out and it's infuriating!
Why do we never see a poster bashing someone for taking care of their loved one at home? Why is that fine? Why isn't someone telling the son that he's ruining his mother's life by hovering over her and not giving her socialization with people her own age in Assisted Living?
Yet people find it perfectly acceptable and JUSTIFIED to tell a poster her mother has been 'thrown away' in a nursing home and is 'lonely' and 'scared' and 'miserable' and being 'mistreated' and fed 'dog food' and not being cared for or showered or dressed in clean clothing. Really? How do YOU know how MY mother is being treated in HER residence? You don't!
There are bad Memory Cares & SNFs out there, of course there are...........I had my mother in one in 2019 for rehab and had to TAKE HER OUT OF THERE in short order and get her into a new SNF that was wonderful. I even moved both parents out of one so-so AL into another one that's terrific.
But guess what? There are bad PRIVATE HOMES out there too, where the sons and daughters are screaming bloody murder at their mother all day long, and leaving her alone like a dog in the bed, maybe not even feeding her or changing her soiled brief all day long! How do YOU know how the person is being treated in HER residence? You don't! Yet a poster is way more prone to applaud the son or daughter for 'keeping her mother at home' than for placing her in Assisted Living where there is transparency!
We read lots & LOTS of posts here about angry sons & daughters full of resentment over giving up their lives for their parent(s) care. Who knows WHAT is going on in those homes; who's looking out for the elder THERE? Nobody. Facilities each have Ombudsmen and each state issues a license to a facility after an inspection, typically conducted semiannually. Bad facility=license gets revoked.
Remember: In home CGs are not 'saints' & the rest of us 'evil'. Keep that in mind when posting.
Think before you post. Don't pass judgement on ANYBODY who's looking for support. If you leave ugly comments, YOU may wind up with an ugly reply to it.
I really believe what you are saying is absolutely true.
I feel like you do, that some people aren’t ready to accept their loved one’s death. So they blame hospice!
I am not heartless. I know that you are not heartless either.
You and I knew that we did not want any pain and suffering to be prolonged with our family members.
Some people think it’s awful to ask God to take them home. I don’t think that it’s wrong to pray for that. They are dying.
My brother was ready to go. I wanted him to be at peace.
He found peace in the end of life hospice facility.
I don’t understand why some people object to their loved one receiving morphine.
Nurses are keeping patients comfortable. The patients are already dying.
I do fully understand that it is extremely hard for many people to see suffering and death.
We all struggle as we watch people suffer.
I told the hospice nurse that my brother was going to walk out of hospice.
He had done that once before! My brother was like a cat with nine lives.
Plus, he rallied for awhile when his children and grandchildren went to visit him.
So I thought it wasn’t his time yet.
The hospice nurse was honest with me and told me, “No, your brother is not going to walk out this time. He is dying.”
She was compassionate but forced me to accept the truth.
I respect people who don’t sugar coat the facts.
I can handle the truth. I can’t handle when people aren’t truthful with me.
The entire hospice staff was fantastic, nurses, the social worker and clergy.
On Mom's side, she made her own choices and she lived her own way and no one ever got that away from her; she likely would choose it all again, and have it end where it did.
Love out to you.
Poor Elaine's mother had her UNDER the rock! The biggest rock ever!
None of us "in the know" would ever question anything about you Elaine. You did your best and then some. It's a wonder it didn't all make you ill or worse. Your mom was your mom, it's sad that she's gone, but she "did it her way."
Hospice was a huge blessing to me and our family during my father's end of life experience NHWM, similar to you and your brother. Many people simply refuse to embrace and accept the fact that their loved one has a TERMINAL illness and is going to die ANYWAY, and hospice just keeps them comfy during the process. THAT is the bottom line. If hospice was in the business of euthanizing people, they'd have been shut down long ago. Not to mention, their FUNDING would END if the person died.
My father had hospice and they were wonderful. Yes he needed morphine at the end but that is to be expected. My mother had end of life care as well at the hospital. They gave her morphine too and I was thankful they did. She was going to have hospice but she passed away before that ever happened. Hospice does NOT kill people!! It is there to HELP people.
It’s not just facility care. The postings that break my heart the most are the ones that say that hospice kills people!
Again, not all hospice facilities are the same.
Certainly, the one my brother had was fantastic!
I have heard you speak highly of hospice and surely you saw their wonderful work when you worked in the health care industry.
We cannot convince certain people that there are many end of life hospice facilities that are a blessing to the patients and their families.
My brother died comfortably and with dignity. I could not have asked for anything more than that.
Elaine, your life and your mom’s life could have been so different had she gone but she refused it.
You did your best. No one will ever question that!
If someone had walked in my mothers house they surely would have blamed me for the way my mother was living. A huge hoarding situation, she refused to bathe or wash her hair or change her clothes. She even had a couple or sores on her bottom that she told me about. I said let me wash them for you. She would say no and then scream elder abuse at me!!!
So many things I had to let go because of her refusal. I begged people to help me. I begged the doctors. I called APS, I begged the social worker, I begged the elder lawyer. They all said the same thing. I’m sorry there is nothing we can do because she is competent. They went on to tell me that just because someone makes bad decisions does not make them incompetent.
Just because someone has mental illness does not make them incompetent.
It was a hard lesson for me to learn. I remember one of the fireman coming to my mothers house and calling me to tell me her house needs to be cleaned up. Really???! I told him to go ahead and clean it. See what happens when you throw out ONE piece of paper.
I begged APS to come to the house and see how she lived. I begged Social workers to come out and see how she lived. I begged her own doctor to come out to her house and see how she lived.
They said if she won’t open the door, there is nothing we can do. Of course she won’t open the door. It’s locked and she won’t open it for anyone, I used my key.
So thank you lealonnie for pointing out we can’t judge anyone because sometimes things appear one way, but in reality it’s something else. Big hugs to you!!!
Most people can see through ridiculous statements made by certain people. If not, we can call them out. If they respond positively great. If not, it’s a shame but I am not surprised at the reactions of close minded individuals.
There may be some people that we have more in common with than we think we do.
Others, are polar opposite of us! They can be annoying.
Some people we genuinely feel a connection to.
I wish everyone well. I accept that I will regard some opinions higher than others because they are more in line with my own personal beliefs.
While I believe in hearing all opinions because that is how we learn from each other, I don’t feel as if I have to change what I believe, and I will not take on the responsibility of trying to convince close minded individuals. I don’t need that headache in my life.
I certainly don’t expect or even need everyone to like or accept me.
I have been this way since childhood.
I can remember as far back as 2nd grade when a new kid came to my school. She was very shy.
I brought my jump rope to school everyday to play with at recess.
We used to play that game, ‘I like coffee. I like tea. I want ? to jump in with me!’
My friends and I loved playing that game.
I saw the new kid by herself. So I asked her to jump in with me with my jump rope. We started laughing and playing.
My friends told me, “If you play with her, we won’t play with you.”
My new friend said, “You better stop playing with me because they will no longer be your friend.”
I looked at her and said, “No! They aren’t going to tell me who I can’t play with. I want to be your friend.” I continued playing with her. That was that!
Bullies moved on because they didn’t upset me. They also knew that I didn’t care what they thought.
I was teeny tiny but I stood my ground.
I don’t know where I learned that. I suppose my parents and grandparents. Or maybe from fighting with my brothers! LOL
I just know that the more I pay attention to what matters the most versus what matters the least, the happier and more at peace I am.
I respect people with different opinions than myself. I do not respect when people are not respectful of others. It’s sad to see.
This is true. I do post examples for how facility care was great for my mother, in response to some who bash. For me it isn't so much defending or justifying my decision, but to let the basher know they are wrong AND to perhaps help the OP know there are good places! If we never address these comments, it may be assumed that facility care is crappy!
However, most of the time I respond to the bashers is to ensure the person who posted the comment or others trying to negotiate their own journeys doesn't come away with the wrong message.
IF they only posted preferences, I would NOT really feel the need to speak up. Those who lump all facilities together as bad DO need to be responded to, hopefully just to get them to tone it down or to help ensure the OP isn't turned off. I will sometimes also respond to those who think placing a LO is the only answer.
While on the topic of "assuming", there have been other postings that sometimes get a bit heated. While care by siblings isn't always shared, or perhaps isn't shared "equally", projecting your own anger and disdain for siblings who don't help, don't help enough or criticize you isn't productive. Sharing commiseration is okay, but if you just ASSUME the sibling who isn't sharing the care 50-50 because they are not local is really bad or like your own situation, you could be wrong.
The case in point was back in December. Many posts were helpful, but many others were not. I resorted to PMs rather than just commenting and it turns out the issue causing the big problem was an infection in the mother's mouth! OP responded to me that once treated, mom returned to her old self and she had a good heart to heart talk with her sister. I had recommended OP post the same information to the thread, but she did not. I don't blame her. She was probably worried she would get more flak. Today I took it upon myself to post an update there, asking forgiveness from OP for stepping in, perhaps overstepping, but I felt it needed to be said.
So, along with tempering comments about home-care vs facility care, everyone should be mindful that while YOUR situation may seem similar to the one the OP is describing, you don't know all the details. Try commiseration, understanding, support, asking questions etc before assuming you know everything and that lambasting the person would be the best solution. The similarities may be less than the differences in each of your own situations...
very sweet of you, thanks! :)
i wish us all strength :).
we don't know each other, but somehow know each other a little through this forum. you have also brightened my day with your messages.
hug! onwards and courage!
live life!
bundle :)
I couldn’t agree more. I have begun to think like you do about this more and more on any topic, not just caregiving!
We are who we are! We do not have to explain ourselves!
Thank you for this wise reminder.
I find that when I follow this way of thinking, I have the most peace.
On the other hand, when a LO is placed in a resident care facility it's guaranteed. No one in the family has to uproot their lives or bring in contractors to bust up their house installing ramps and lift chairs. Many nursing homes and assisted living facilities are very nice places with quality staff who really do their jobs well and look after your LO right. This is true.
Here's something else that's also true. Regardless of excellent quality hands-on care in a facility, no business end of any nursing home or AL in this country can be trusted on any level. The business part of these places will blatantly abuse an elder's finances and will pull any and every kind of underhanded act and even downright criminal thievery.
It's all about having common sense. If you're placing your loved one in a nursing home or AL, you will make sure they are being well cared for. You will research such things as ratio of CNA staff per number of patients. You'll pop in regularly. You'll talk to family members of residents already living there to get their input too.
Always ask resident's family members about the billing and how they would rate it. More times than not they will tell you some things.
Never sign any nursing home documents that haven't been reviewed by a lawyer. If your LO is paying out of pocket and is not on Medicaid, do not give them a social security number or any account numbers because every business end of any nursing home or AL will rip a person off.
No one is walking in your shoes.
Be proud of the efforts you put out on behalf of the LO you are caring for, whatever they are.
Don't waste time or energy defending yourself.
If people question or comment find ways to deflect them.
Love yourself and your choices.
There are comparisons that can be made, but only in respect to the care needed or behaviors. DOING the care is NOT the same. Correcting the behaviors often never works.
For those who must work to survive AND ensure they have the finances and ability to care for themselves in their own old age, there is usually the option for day-care and/or school, which enables us to continue supporting ourselves while raising kids. Also, kids generally grow, both in size and capability, while elders continue to decline.
Yes, there are day-cares for adults as well, but my mother tried one for my father. He wasn't that far down the road and he resented being in a place with those who were pretty much incapable of much interaction or ability. There weren't really any others in the area, so that didn't work for her.
I waited to contemplate my response, and also see what negative responses showed up. Generally posts like yours are preaching to the choir!
I can't stress enough though, that this topic is mainly to address the blanket statements, often defended as opinions, that all facilities are bad. I also did touch on the comments that immediately suggest placing someone in a care facility. It isn't always possible. As you note, the difficulties and guilt expressed by those who are doing home-care and are suffering for it need to be considered. Those who voice their "opinions" and lay guilt don't even accept that it IS opinion or that their statements are guilt inducing, laying the blame for more feeling of guilt on the person who posted the initial comment.
We also know the common expression for opinions, right? ;-)
BundleofJoy: Your posts are always so full of love and light; I enjoy reading what you write to others ALL the time. You are a blessing to have around here, you really are.
My primary objection is not to those who state home-care is best, but those who continue to bash ALL facility care as wrong. Although it isn't as bad, those who immediately state/demand placing a LO should also be toned down a bit. These should ALL be stated as a preference, but with understanding that one-size does not fit all. Home-care isn't always feasible. Facility care isn't always affordable. Sometimes the original post doesn't provide enough information, so ASK questions, find out what the situation is, then make your recommendations. We can't ASSUME to know everyone's circumstances, financial situation or past/present interpersonal relationships.
In some instances a medical condition (UTIs or other infections) can precipitate a change that makes home-care seem untenable. This is where asking questions can help. If something changed recently/quickly, recommend getting a medical assessment and if treatment works and one can continue home-care, great. If not, then suggest considering facility care.
Finances and dealing with recalcitrant LOs can impact decisions. Many assume POAs give us the authority to force a move. It doesn't. Many assume one can choose a NH, using Medicaid when finances aren't sufficient for AL or MC. Not so. Every state has different rules about income limits. Many don't cover AL or MC care. NHs also have say, because those who don't need specialized nursing care likely won't qualify.
PLEASE, try to be more patient and understanding. What works for you may not work for someone else. State your preferences, NOT your opinions.
I've posted it before, but here goes again:
I could not provide the necessary physical care for my mother.
My mother was NOT safe in her own home.
My mother refused to allow aides into her place.
My mother had sufficient funds to pay for care.
I chose the facility carefully, close to my home to allow visits often.
I often chatted with residents of the IL and AL sections.
With one exception, the residents were HAPPY to be there.
I interfaced with mom, staff and other residents in MC.
I would show up at different times for visits.
EVERY time I visited, mom was clean, alert, well fed and cared for.
I often ate meals w/out prearranging, so it was regular fare.
The food was good, NOT dog food.
The activities were fun for the residents.
Residents were not sitting around, doped up.
The staff was always concerned about any changes.
Any issues or concerns, I was notified right away.
Staff was devastated when we lost mom (due to strokes at 97.)
I personally have NO qualms about the facility my mother was in.
I have told my kids to use this place if I ever need care.
Again, be mindful that you state your PREFERENCES, NOT your opinions, and PLEASE stop lumping all facilities into one category (bad.) The ones you have experience with might be bad, but you don't know ALL facilities. There have been enough comments from us who value the facilities our LOs resided in to show that there ARE good places out there, it's just up to YOU to find them.
So very well said.
I am like Lea, frustrated by posters who feel all facility care is poor or that it shouldn’t ever be done! That is just insane!
You are right, it is why I did the post about misguided guilt. People have misguided guilt and misguided compassion too. It takes time to come out of it!!! Doesn’t happen overnight. Patience is needed when speaking to someone in these situations.
Now, I realize that people who don’t believe in facilities will NEVER be convinced and like you say, it will be an ongoing argument forever so for the most part, it is a waste of time and energy.
I understand if anyone wants to voice their opinions. Most do this but I don’t hold my breath in the hopes of being heard.
Honestly, I really don’t care what these types of people think or feel. They are entitled to their opinions. I do hate that they spread ignorant ideas but I can’t change it and they thrive on the attention, I don’t need the headache!
I will not discount the wonderful caregivers at home.
I have done it myself and everyone needs a place to vent!
They shouldn’t be told to place their loved ones in every posts. So, it goes both ways.
Of course, there are people whose loved ones would be better off in a facility and we should gently suggest it.
I hate to read smug comments from either side. No one responds to ‘smugness or know it all’ attitudes.
Bottom line, there are crappy home caregivers, wonderful ones and everything in between.
Same thing with facility care. Some are great, some mediocre and some crappy!
There are MANY factors that must be considered when making decisions for our elders' care. It isn't that simple. We do need to be respectful, ensure our posts are just recommending one or the other solution, rather than stating it is the BEST, because the best really does hang on many considerations.
My primary objection is to those who state home-care is not only best, but continue to bash ALL facility care as wrong. As I've noted to those who post comments like this, until you can visit EVERY single facility across the country, you have no business making those statements. As I noted to one, there are close to 30,000 facilities, so it isn't likely you have checked every single one. There are plenty of us who have a LO in a GOOD facility, with great care provided. It frees us up as well, to have pleasant visits with our LO rather than playing nurse-maid only and having whatever relationship remained ruined by overwork, stress, and constant negative feedback from said LO.
My decision to place my mother was done with careful consideration. We tried bringing in aides. Nope, she refused to let them in after less than 2 months. My house isn't safe for her, nor could I provide the physical help she would need. The bathrooms are too small to make handicap accessible and the house is mid-repair. Brothers had no clue, so it would have been like putting her into the worst facility out there if that option was taken!
Choosing a facility, if one can't or won't provide the care should be done carefully. See, hear, smell, taste, feel. Don't just view the brochures or rely on the simple tour most places provide. Go other times just to see for yourself. Talk to staff and residents. If a place restricts visitors, skip that one. A facility should welcome anyone during normal hours, and not restrict access. If funds are available, choose a non-profit. For profits are more likely to "cut corners" in care and services. YOU are the one who is charged with ensuring this is the best place for your LO. Not reviews. Not glowing words on a web page. Once you choose a place, make sure you visit often enough and at different times of the day, to check on your LO. If you have any misgivings, find another place.
Also to be continued...
My primary objection is NOT to those who state home-care is best, or to those who insist on placing a LO, but those who continue to bash ALL facility care as wrong.
"jacobsonbob
Jan 29, 2021
"The fact is that no one should shame anyone, no matter what side of the fence they are on."
This is true--but I hope in this forum we can tear down that fence."
There likely will always be that fence. I have NO issue with someone posting their PREFERENCE for home care and backing it up with suggestions for how to make home care work. Just make it clear that this is what you believe, but understand that it doesn't always work. Maintaining that stating your "opinion" is just freedom of speech doesn't cut it when you are disparaging ALL facilities.
I know why lealonnie1 wrote this post (similar post from NeedHelpWithMom was posted previously.) The "argument" between home care and facility care will go on. My issue, and this posting, is with the home-care-warriors who maintain their way is the BEST way and ONLY way we should care for a LO, and also continue to BASH ALL FACILITIES, with nonsense like they ALL are abusive, feed dog food, keep the residents over-medicated, state your LO will become lonely, scared, miserable or lose the will to live, etc.
Are there places like this? Sure. But, there are also home-care situations that are no better, dangerous for the person needing care and sometimes for those who try to provide the care. Additionally, sometimes there are not enough resources to provide the care in home or facilities. Please see my post:
https://www.agingcare.com/discussions/suggestion-to-become-active-in-promoting-caregiver-help-not-a-question-463299.htm?orderby=recent
If ALL of us can do our part and get our Reps and Senators on board, to get these changes passed, it can help those who don't have resources to find quality care, whether in-home or in facility. Too many elders have dementia and this is negatively impacting so many. There might be some who are easy to care for, but over time it will become more difficult. There are many who are NOT easy to care for. Too many families fall into the cracks where there aren't sufficient resources to provide the care, in the home OR in the facilities. Currently there is no simple solution. We all have to fend for ourselves. Contact your rep, whether you prefer home care or facility care. The changes suggested will benefit MANY, even those who work in care-giving roles!
If someone merely needed a safe place to live, proper nutrition, transport to appointments, etc and can remain in our homes safely while we have to work or attend to other "duties", then sure, home care makes a lot of sense. My parents and mom's sisters took turns caring for my grandmother. She was easy to care for. She didn't have dementia and wasn't difficult, in any way. She also passed in her late 70s, with mom and sisters still in their 50s or early 60s. Most kids were out on their own. It really didn't make a huge difference in their lives. It made sense to keep her in their homes and I enjoyed my time with her.
Now, when one has dementia, the game changes. Depending on each person's "journey" down that path, things can become dicey quickly.
To be continued in a second post...
i appreciate reading your message a lot.
i wish us all strength, courage, and to our loved ones too.
caregiving decisions are difficult sometimes. we must always remember, to live our lives too! we can’t waste our lives. we must protect ourselves. loving parents want us to be happy too.
bundleofjoy :)
People that are that miserable aren’t going to be happy anywhere! A beautiful facility providing the very best of care certainly won’t make them happy either.
The upside though is they will be out of the caregiver’s home!
There are just as many people crying on this forum about their moms that are in very nice facilities.
Ornery people will continue to be that way.
Thank goodness those people get a break though because they don’t have their cranky mom living in their house 24/7, 365!
People need to do whatever is right for them and their parents and who cares what others think or say? It doesn’t concern them. It’s your life. Others opinions should not matter one tiny bit.
Whether we like it or not, sometimes it is necessary to develop a thicker skin for our own sanity.
In time though, most people start to realize that not everyone’s opinions count.
couldn’t have said it better ...
why are all desperate posts from caregivers with their loved one at home???
do you think your LO happy and
engaged at home ?
think again