Just asking b/c if you really don't want to leave HER, but need help, maybe the answer is the 2 of you moving to an assisted living apartment, where she can get the care she needs and you can be free to come and go.
I know of many couples who have made this choice. Most of them kept the 'family home' renting it to family--or whatever works, with the idea that once the sick member of the marriage needs MORE care, or passes away--the healthier if the two can return home.
In a lot of cases, the CG dies before the one being cared for. I think it's about 35%---that's a lot.
Come back and add to your story, so we will know how to best respond.
BTW, it's NOT wrong to want your own life, and 24/7 CG is brutal on even the healthiest person.
With all that your wife has going on,(according to your profile)it seems like you're now to the point where you not only have to do what's best for her, but for you as well. And unfortunately that probably means that she really doesn't have a say in the matter anymore. You are probably more than burned out and are just coming to the realization that you can't continue on like you have been, and that's ok. We're all human, and we all have our breaking points. So instead of "leaving," perhaps it's time you get serious about finding the appropriate facility to place your wife in, so you can get back to just being her husband and her advocate, and let the rest of the 24/7 care fall on folks better equipped to deal with her care. I'm sure you've done a great job so far, so don't beat yourself up because you're now at the point of having to place her. You matter too, and while it will be hard to place her, in the long run you already know that it's for the best, and is what needs to be done. I wish you both the very best.
With a diagnosis of dementia she no longer knows what is safe for her and safe for you. Placing her in Memory Care is a difficult decision, one that is not made on a whim or spur of the moment. It takes planning, thought and care.
It amazes me that care Facilities either Memory Care of Assisted Living are staffed round the clock with people that are trained, many get educational hours to keep their certification current and valid yet some how "we" expect or are expected to do the same in the home with no one usually to help, no equipment and a house that has not been built to accommodate someone in a wheelchair or using equipment.
I based planning on moving my Husband to Memory Care when it came to SAFETY. That was the one thing that would have made the decision for me. If it was no longer safe for HIM for me to care for him at home... If it was no longer safe for ME to care for him at home.... I would have made the difficult decision to place him.
other people have other triggers that would be the factor that would place their loved one. Toileting, violence, unable to transfer.... YOU make the decision that is best for YOU. If you are physically, mentally, emotionally exhausted you can not continue the way you are. It becomes dangerous. Here we are back to SAFETY again.
Placing her is not giving up. It is accepting that you can not do this alone, safely. No one WANTS to go to a Nursing Home, Memory Care but sometimes it is necessary.
So, I used to work as a receptionist at a Memory Care AL in 2019 and got to meet a LOT of husbands who had no other choice but to place their wife into the care of the AL when their needs became too great at home. "No other choice" being the key words here. They didn't 'want to' place their wife; the wife probably 'didn't want to go' into the AL, but dementia and illness often reaches a point where choice leaves the scene and necessity replaces it. These husbands *and wives too* would come, some on a daily basis, to visit & spend time with their spouses. They'd take the spouse out for lunch or dinner, or out for ice cream, or they'd sit together in the common area & watch a movie, or even take a nap together in the room. Then the spouse would get to go home and live his life w/o the burden of having to change Depends, worry that the wife was wandering out of the house at night, deal with screaming tantrums, or falling, or whatever the nightmare du jour would be.
The reality of the situation is that you can no longer care for your wife at home. Is it 'wrong' for you to place her? No, of course not. In fact, it's wrong for HER to 'refuse' to BE placed and by doing so, placing such a huge burden on YOUR shoulders. Being the sole 24/7 caregiver for another person with a ton of needs is TOO MUCH for most people to handle, and there is no shame in admitting that. I could never do it for my mother, so she lives in Memory Care Assisted Living now, and regular Assisted Living before that.
If you are asking if it's 'wrong' to leave your wife, as in divorcing her or ditching her to fend for herself, well that's a horse of another color. You can place her first, make sure she's safe & cared for, and then decide what you want to do from there. Being overwhelmed with her care as you are, I'm sure you're having the 'fight or flight' reaction and 'flight' sounds like a mighty good alternative right about now, especially since she's being stubborn about placement.
Try to remember this: there are TWO lives here that matter, not just hers. YOUR life matters too. Sometimes we get so caught up in worrying and caring for the sick family member that we lose ourselves in the process, forgetting that WE matter too! Try to regroup and make a decision that takes BOTH of your lives into account.
Every burnt out caregiver wants to run away including me. But a smart plan has to be in place…start to tour nice facilities nearby. If she wanders & has behavior problems, a nursing home would be best. They’ll put an ankle bracelet on her & take care of her. You deserve a life too. You can visit her as much as you want. Then you’ll change your screen name to “Youngman” Hugs 🤗
If your wife cannot do for herself and has dementia getting placement in a nursing home is not her decision to make. I've been in senior homecare for a long time and have worked for more people than I can remember. I never had an elderly client on my service who was agreeable about going to a nursing home. Even the ones who were invalid or completely out of it with dementia. It is not wrong for you to want to leave. Everyone who's ever been a caregiver has wanted to leave at one time or another. If caregiving for your wife at home is no longer possible or safe then the only alternative is a nursing home. Do what's right and find a nursing home for your wife. In this life doing what's right does not always make yourself or others happy. The right thing isn't always what everyone likes or wants. Your wife doesn't want to be in a nursing home. She NEEDS to be in one though. What she needs has to come before what she wants. I'm so sorry for the situation you're in. Please try to remember something else too. Your life and well being is just as important as your wife's.
I meant to mention, true story and maybe caring for mom led this guy to do what he did.
Man was caring for his mom, was away from home and was pulled over by cops, Cops could not get out of the car before he started firing at him. They fired back, hitting him, even though he was hit, he still continued firing on them until he collapsed by his car and died. The shootout was caught on police video.
This happened a few years ago. The female deputy was injured but recovered, the male deputy uninjured, The female deputy left the department and is now with another department.
Uhh they shouldn’t have had a gun in the car! That’s how these “shoot outs” from road rage and things happen all over the country.. just saying..I’m sorry but that’s ridiculous, his own fault, and could have easily been avoided.
Before u place her though, speak with an elder lawyer. Medicaid allows for assets to be split. Wife's split gets spent down then Medicaid is files for. You remain in the home with one car. You get enough or all your monthly income (SS and pensions) to live on.
Do as she NEEDS for safety. Nursing homes can provide good care, good meals and activities..As a retired clinical staff member {27 yrs} of nursing home and assisted living facilities I have seen ladies come in unhappy and within a few weeks they are cheerful again. Many ladies like the attention a long term care nursing facility provides..My counselor told me “your job as a daughter is to make sure your mom is safe, well fed and has a good roof over her head..you are NOT responsible for her happiness”. Wow..that helped. I put mom in assisted..I held back on daily visits. she adjusted quickly and now loves it there …she likes being with people her age..and is no longer lonely! I visit 3x weekly and take her out for rides, ice cream etc. Good Luck…
Hello, We all can share some similar stories, but one that I know of personally happened this way. Most ALF offer respite care. A friend of mine was struggling with the same situation as you, her husband’s needs were getting worse, but he refused to consider ALF. She needed to attend to a family situation in another state so she was able to find a local ALF offering respite care. He agreed, he liked, she now visits him almost daily. He is well cared for and she is more able to enjoy his company.
BurntCaregiver has it right. I would add that before you take these steps, be sure to have all yours/hers financials and legal documents (wills/trusts/POA/HCP) in place. This is imperative. If you don't have this done, contact a good elder care attorney to do it asap. Lastly, would you consider hiring in home care as a transition to a nursing home? This will give you a much deserved break while still keeping your wife safe at home. You don't offer much more info about her condition or if other family members are involved - but we are all here for you as your story unfolds.
My dad was very uncomfortable moving from independent care to memory care. While he was in rehab (and he screamed bloody murder at just being there, too!) my sister listened carefully to what he wanted. She said he said he simply wanted to be able to have a part in the decision of where he would be going, so we found two different places, and had him participate in deciding which one he liked best to move to. Transition was much easier that way! Being in rehab before that also helped.
Do not know the relationship you had with your wife during better times. If it was strained then, the demands of caregiving may be unbearable.
My husband was in a nursing home 7 1/2 years. It was agonizing for us both as I watched care steadily decline as the nursing home industry changed. I could abandon him to their neglect or fight constantly with regular complaints to State, complete with video evidence of neglect, Found out that State does not enforce Centers for Medicare and Medicaid Regulations.
Placing someone in a nursing home is a heavy decision. If you still love your wife, you will have possibly as much stress as you do now.
A Nursing Home Waiver may allow her to stay home by giving you assistance that allows you a manageable life.
I don't blame your wife for not wanting to leave her home where she feels lived,, safe and free to move in to a Cold, Unfriendly. Unloved Environment where one loses their right and their dignity. Nursing Homes are all Understaffed and not unusual to wait 20 minutes are more just to get help to go to the bathroom. Also, majority of patients especially the ones they label trouble just because they ask for help too many times or question. Thos patients will get meds for so called depression and anxiety which is what they'll tell you. Your loved one will be kept medicated not for loved ones sake but to make it easier on the help.
I know when you visit to tour the Nursing Homes, theyoom pretty and you're told what you need to hear but blieve me. It isn't what you see..
I understand burn out of feeling stuck with having to take care of someone but you wouldn't want to go to a Nursing Home Either.
Check with your Insurance and see if you can have Home Health where you'll at least get Aide coming to help with baths/Showers ans a Nurse come once a month to check vital signs..
See if your Ins pays for a Caregiver to come to the house.
If not, think about hiring Caregiver help or hiring a Live In.
You absolutely can't do it all on your own.
BUT I'd you have help so you have free time for yourself then you won't have Burn Out and your wife can live a longer and happier life in her own home.
Also, You can install cameras in the house so you are able to come and go while being able to check on her anytime from Your cell phone or laptop computer.
I installed Nest Csmeras which are awesome and not hard to install.
My dad in his house, is a handful with his anger and depression. He needs medicine to help him. While not everyone should medicated, some need it to fix a chemical imbalance, or to calm dementia symptoms.
A nursing home is like a pit of vipers in hell - no one should be there and everyone will fight to the death not to have it happen. Only a few will go to the extremes to prevent it (like taking their lives). However, if the caretaker simply is physically and mentally incapable of putting up with and handling the needs and behaviors of the ill patient, you have three choices: get a caretaker to relieve you completely; put them in the home so you save your own life and sanity and don't let yourself get destroyed; or you put up with them and they will eventually destroy you. The person who is impacted the most by them makes the final choice. Sometimes you have to do the worst step and put them somewhere to save yourself. I know of no other way. Let them rant and rave - you remain and now you come first.
You do every reader a disservice with this vindictive reply. Nursing homes, like just about everything else, are quite different from each other. Some are bad, some are very good. When considering the need for full time nursing care carers need to tour homes, read reviews of them, and talk to staff and residents. Asserting that all are bad is not only untrue, it is also cruel to those readers who must find a good place for a loved one who simply cannot be cared for at home any longer. Shame on you.
Absolutely do NOT send her to a nursing home! That is the worst thing you could do to her. Look for in-home care and contact IRIS if you need financial help and are in Wisconsin. There are programs in every state to help with in home care.
Do not hand out terrible advice like this to a man who is struggling so mightily! Nursing homes are not viper pits, just like Bridger above said in their post, coming straight from the HORSE'S MOUTH; from one who resides in a nursing home. My own grandmother and aunt thrived beautifully in a nursing home for several years and the family didn't have to wreck their own health in a futile attempt to play doctor/nurse when they weren't able to do such a thing.
If caring for your wife has become too much for you to handle, you do have a few options. 1 - In-home help from others. Adult Day Care, respite in a nursing home, and/or in-home help from others can ease your burdens while still living at home. Ask family, friends, members of faith community, and home health aides to help daily so you can get a break. 2 - If you have reached the point where you can not manage your spouse's care, it is time for residential facility care. Either you can move into assisted living type apartments together or move your wife into one. You can visit her as frequently as you can manage.
I am in a nursing home right now. It's clean, very comfortable. The is kind and considerate. they answer buzzers quickly. Never more than it takes them to walk down a hall. It is not a viper pit or horrible in any way.
Bless you if you are this lucky - I am happy for you. I have seen the insides of quite a few and what I see has given me nightmares. There is no way in hell I would go near one ever - I'd end it first. This is the most horrific possible ending to my life that I can imagine. Assisted living is bad enough with all the dementia people. I will be 88 but can't walk but I am 100% high functioning and do all the things a 30 year old does - against impossible odds but through sheer determination, I force myself to do the things almost no one like me even tries doing - and I SUCCEED.
Don't abandon her, because you are also abandoning your own life and any family you have together. That is the worst thing for both of you, logistically and fiscally as well as emotionally. Sometimes you can do a better job part time than trying to do it full time:
My aunt had a stroke in her early 80s but was able to come home. After the second stroke my uncle could not care for her at home. He regretfully put her in a nursing home. He came everyday and spent the day with her. She was fine, she was happy, she knew she was cared for and loved. When she finally died there were no regrets. He had earned the respect of everyone in the family (and everyone who knew them!) for how well he cared for her.
If he had skipped some days or visited half days it still would have been good. Neither of them wanted her in a nursing home but that was the best thing he could have done. He was able to sell the house, move to a smaller apartment, and make a life for himself.
If you have been married a long time you want what's best for both of you. You can have that by taking the time to find a good placement for her in assisted living or full care, whichever she needs, that is closeby. Let your children (or other close relatives) know what you decide and get them to help with the move, but not necessarily the decision making process. Make sure her new apartment or room has her personal things in it to look as much like home as possible. Arrange things to her liking. Make sure she is set up to videochat with friends and family and encourage everyone to do so. Once she settles in and makes new friends she might even like it.
I noticed you use the term nursing home. Is this because your spouse has so many ailments that she needs hands on nursing care or is this just a generic term that you were using? I ask because the term nursing home is a very outdated term and has a very outdated quality of life. If you are not clear on the differences between nursing home, skilled nursing facility, memory care, assisted living and independent living, I suggest you contact your local Alzheimer’s Association or Area Agency on Aging. The latter is a government funded organization that serves every community in America. Moving to a “nursing home” is a death knell for anybody. Your wife does not have to move to a nursing home unless she has some serious medical condition that requires around the clock nursing care. Nowadays, most memory care residences are very homey and offer activities that engage and enrich the residents. Your wife’s own furnishings can be brought into her room and her medications and dietary needs are easily managed. Together you can choose between a smaller adult foster care home that caters to memory challenges or a larger memory care facility with 20 to 50 residents. Check out your local care facilities and you’ll see that they have many things to offer your wife and you. You and your wife are a team and the needs of BOTH of you need to be met. A person with memory loss easily overwhelms the caregiver and the caregiver’s life ends up being about taking care of the person with the memory loss and the caregiver loses their own identity. Just think about how many times you’ve been asked how your wife is, but nobody has asked how you are. The depression rate for caregivers is over 50%. This is the highest rate of depression in any type of job. Please balance the needs of your wife with your own needs and get some guidance from the Alzheimer’s Association or the area agency on aging. They will help you figure out what is the best route to take for your wife’s particular needs. Once you have the information, tour the care facilities in your area. You can gradually introduce your wife to the idea of moving and have her help decide which of the top three places she wants to live in.
There is a 'nursing home' here where I live in the burbs of Denver that is anything BUT a 'death knell'. In fact, it looks like a hotel. It's private pay and I looked into it for my folks when dad was in need of what looked like more care than an ALF could provide. The apartment is like a hotel suite; the level of care provided is top notch. It's called Wind Crest Senior Living in Highlands Ranch Colorado for anyone who wants to look it up and thinks 'all' such places are 'viper pits'. When my mother had to go to a 'nursing home' for rehab (which is also a dreaded long term care nursing home), she liked it there so much she will be moving there when her $$$ runs out for private pay in her current Memory Care ALF. She's on board with it and has no plans to commit suicide as a result *for those who think it's a good idea to use such lingo*
Not all nursing homes/SNFs are 'government funded' organizations, so you may want to stop with the 'across the board' advice that's incorrect and prophesizing doom. Not everyone has the funds to private pay; not everyone is in good enough physical condition to be accepted by Memory Care ALFs or other such facilities. We don't know what the OPs situation truly is.
Does she need nursing home - as in, 24 hour hands on care? Or maybe she needs assisted living? Is there money to pay for this sort of care. Could give better info if we knew what level of care she really needs.
Any kids in the family willing to step up and help you out? Not only is she your wife, she is their mother. A little respite for you on a regular basis might help a great dea.
Riley2116 I agree with you based on having relatives in nursing homes for 10 years. USA has over 15,600 homes, so there may be some where residents receive proper care. I have not seen any in Texas.
My experience is depends on the administrator, management company, and whether a Real Estate Investment Trust (REIT)owns building.
During 10 years with my family members, there were 6 administrators for one nursing facility. Two were great, one medium, three horrific, lying monsters. Management company changed 3 times and REIT who owned building changed twice.
Always difficult to choose as all can be great one week and then building is sold, new management company hired by REIT, and new administrator hired by management company.
In Texas, Health and Human Services, charged with enforcing Centers for Medicare and Medicaid (CMS) regulations bury their heads in sand.
If I reach a point where nursing home is my only option, will end it all.
My mother has been in Prestonwood Court in Plano, TX for almost 4 years. They have taken very good care of her, and believe me, I would know it if they hadn't. She is not a patient person and will call me if she hits her emergency button and they don't respond immediately.
She has been quite happy there. They had no Covid cases during the various surges and have received a JD Power award. She is now in hospice and when I last visited there were 2 nurses monitoring her. They know her very well and seem to genuinely care. Yes, I pay a fortune each month but I feel comfortable that it is worth it.
So, there are a few facilities in Texas that provide exemplary service.
OLDEMAN: As your profile states that your wife has Alzheimer's, she requires FAR more care than you can provide at home. It is not her call to decide that she doesn't want to go into a nursing home since her brain has a major disease; the decision will be your's. Best wishes.
DrBenshir, I love your response to the gentleman (OLDEMAN) who posted his question. I agree he should not abandon her. Since you (OLDEMAN) feel like leaving her is wrong, the rest of what I write here makes the assumptions that you love her no matter what AND that she needs total care, especially physically; for example, she is incontinent one or both ways, is virtually bedbound, needs feeding assistance, and generally can't do much for herself. My wife was in that condition in various nursing homes (while she or I recovered from surgeries). Once I was able to walk, I spent every day with her when she was in a nursing home. She couldn't press the call button for help even when she realized she did need help. I made many trips looking for a staff member to get her to the bathroom using a Hoyer Lift or asking them to clean her up after her incontinence episodes even in the best nursing home in our town. Staff response to pressing the call button was very slow. When she was in the other two nursing homes before finally getting transferred to the good one, I had to change her diapers myself most of the time. If, however, your wife can attend to most of her needs independently, you may get by with spending fewer days at the nursing home with her. Again assuming that she is very dependent upon your care and the staff's care, spending time with your wife daily for a few weeks should allow you to judge the kind of care she's getting, and if it's good, you might be able to skip a day now and then, as DrBenshir mentioned in his post. I agree with DrBenshir that if there is no other good option, you should choose a nursing home (they are now called Skilled Nursing Facilities-SNFs) close enough to your home that you can at least visit her daily, then choose the best of the close ones. Usually the better ones do not accept Medicaid (Public Aid) patients unfortunately. We have one decent nursing home (SNF) in my town (in central Illinois) and it's the only one with good patient ratings online and by word-of-mouth. If my wife would have had to be there long enough that we would have run out of money, she would have had to be moved to a Medicaid facility, and that would have meant poorer care. Other people have responded to your post by suggesting there are alternatives to nursing home (SNF) care that may be better, and I agree. SNFs are extremely expensive, unless she qualifies for Medicaid, in which case, they would cover her bills including medications. Another consideration with putting your wife in an SNF is that each one, at least in Illinois, assigns one primary doctor to each patient. That doctor sees the patient at intervals, like once a week or once a month. My experience with my wife being in NSFs is that her physicians were relatively unconcerned about my wife's care. She was unable to see her private internist due to SNF rules. That was bad for many reasons. I'm a bit more stringent than DrBenshir about how often I think that you or a family member should stay with your wife if she goes to a nursing home. I think you should commit yourself to either be with her daily for as long as you can stand it on each visit, or make sure a family member shares that duty. Whether a patient is in a hospital or an SNF, daily personal attention from a visible family member is, I think, the only way to ensure at least adequate care for the patient IF the patient needs total care. Although, as I wrote above, if your time with your wife in the SNF convinces you that she is getting good care, maybe you could skip a day here and there and rely on the staff, then check with her to see if she thinks she is getting good care. If she doesn't think she is, then you should resume daily visits or share that duty with a family member. As for other alternatives to putting your wife in an SNF, homecare is what I would recommend, and hiring an accredited agency is preferable to hiring your own private caregiver. I will finish in another post.
Very wrong about poorer care if on Medicaid ! Not true .care is the same regardless. Some of the BEST ( most actually) LTC facilities take Medicare and Medicaid. WHO can afford $18,000.00 a month unless you are a billionaire? Do some real research before you give misleading and incorrect advice please.
Continued from previous post: By hiring your own caregiver independently, you would have to purchase liability insurance in case s(h)e gets hurt, pay her/him yourself and comply with the federal government's withholding tax rules, find a way to cover that caregiver's absences and days off, which would mean hiring at least two private caregivers, and other problems, such as firing a bad caregiver and hiring another one, not to mention finding good caregivers in the first place, based upon recommendations from a reliable source, such as a personal friend who knows a good caregiver. My recommendation, if your wife needs constant care, is to hire an agency, comply with their rules, with no need to worry about paying for workman's comp/liability insurance, etc. if you would hire private individuals. Of course, just as with SNFs, the problem is finding an agency that has good ratings, and one that is willing to replace any caregiver that doesn't meet your expectations. In Illinois, most Homecare agencies are experiencing staff shortages, have trouble hiring, and the people they do hire are inexperienced. Of the three agencies for homecare in my area that have been recommended by agingcare.com, two had very bad ratings. The third has a long waiting list to become a client of theirs and they are short-staffed and trying to hire, then train, new employees. Hopefully, in your area, you would have better luck. I apologize for being long-winded and repetitive here, if you've even read this far. I agree with everything else DrBenshir wrote. I wish you the best for your wife and for you in whatever decision you make. I have chosen to stay at home with my wife, even though I am often depressed, tired, and at my wit's end. I hope to never have to send her to an SNF. If I did, I would force myself to be there with her as long as I could every day anyway, and I can do that at home with much more comfort despite the frustrations. I am by no means the best caregiver, she deserves better, but she also does not want to go to a nursing home and I agree with her opinion. Best of luck to you, Mr. OLDEMAN.
If the OP cannot afford assisted living, he may very well be unable to afford an agency. In my area, an agency is no less than $25 /hour, 24-hr. care would be $600/ 24 hrs. That is $18,000 per month!
I am getting very close to having to find some place for my mother ( we live together ) .... I've never liked the term dementia... I hate it.... but it is what it is, and it seems to be progressing faster and faster. She has been so nasty lately ..... I am retired and here all the time for Mom, took a week off for a vacation last week, hired a private caregiver for daytime and 39 year old daughter who lives with us was here for her after hours and at night. Mom was so very nasty to my daughter and had her in tears. Daughter is the sweetest person you'd ever meet. Honestly, it doesn't matter that it's "dementia"..... there's only so much we can take. I understand the OP.... just because one hopes to be with their loved one to the end, doesn't mean it is always possible. And as a young 67-yr. old, I cannot handle much more of this. BUT, we cannot afford ALF or caregivers at home ..... So those who keep pushing it need to understand that not everyone is made of money and can afford it.
Hi Katefalc. You are right. I shouldn't have generalized that comment. I was going on my personal experience when my wife was in two Medicaid nursing homes and got horrible care consistently, and residents at those two nursing homes also had that belief. People there were on a waiting list to go to the good one, that doesn't accept patients on Medicaid, because they heard it provided much better care. Once my wife was transferred there, we found that to be true. From that experience, I mistakenly generalized. I now realize there may have been other reasons that the Medicaid nursing homes provided bad care in this community and not the type of financial coverage that accounted for it. For example, maybe the staff was paid less or the facilities were less financially stable. Also, Medicare does pay for nursing home care for 100 days following at least a 3-day hospital inpatient stay but only while you need "skilled care" per doctor's order, not "custodial care". Many, if not most, patients in nursing homes are there for custodial care not paid for by Medicare. You're also right that it's ridiculously expensive if you aren't covered by Medicaid. I will do some research into whether nursing homes that accept Medicaid patients have any different patient satisfaction ratings than ones that don't. If you have data on that, please let me know. If you can give me websites that discuss that, I would appreciate it. In the meantime, I'll look for myself. Thanks.
In my last post in reply to Katefalc, I wrote that "I will do some research into whether nursing homes that accept Medicaid patients have any different patient satisfaction ratings than ones that don't." I found only one article that pertained to that issue. I also checked the SNFs in my community and found that the only non-profit one is the one I designated as "the good one" in my other post. All other SNFs here are for-profit facilities and accept Medicaid patients. The article below supports my original (and, I admitted, overreaching) opinion that SNFs which accept Medicaid patients provide worse care than those which don't. They have lower Five-star ratings of quality, per the article. Here are excerpts from the article: Management and Performance in US Nursing Homes https://academic.oup.com/jpart/article/28/1/33/3805969?login=true (Note: I copied and pasted this from the article since it was very long)
"For-profit “Medicaid mills” serve poorer, sicker and less informed clients and divert resources away from services (Castle and Shea 1998; Harrington et al. 2001; Lemke and Moos 1989). Meanwhile, nonprofit providers tend to cultivate quality, which helps attract more informed, affluent clients. Nonprofit homes have better physical environment, equipment, and resident control; they evoke fewer complaints and deficiencies (O’Neill et al. 2003; Santerre and Vernon 2005). Five-star ratings of quality were developed (CMS n.d.a) based on a complex formula using data on staffing, regulatory violations, and other factors (Thomas 2014). Similar to other government inspections, nursing home inspections and star-ratings combine both archival (regulatory) and perceptual (observation-based and self-reported) data (Andrews, Boyne, and Walker 2006b).12 Nonprofit nursing homes have a significantly lower percentage of residents on Medicaid (with a sizeable 10 percentage-point magnitude) compared to for-profit homes. Additionally, as facility age increases, the Medicaid percentage goes up. Staffing is significantly lower in facilities with more Medicaid residents. Finally, as the poverty rate and market competition increase, so does the percent residents on Medicaid. In competitive markets, facilities compete for non-Medicaid clients, whose cost-to-reimbursement ratios are attractive for providers. The focus on innovation may result in a competitive advantage, enhancing the facility’s reputation, and attracting healthier, more informed and affluent clients. Our findings on ownership are particularly interesting. After controlling for management, ownership in our models may be capturing management practices related to resource allocation and organizational priorities. In the archival models, nonprofit and public ownership is associated with fewer violations and higher star ratings. Nonprofit homes also serve fewer Medicaid clients. These findings are consistent with the theories of nursing home ownership and performance. The for-profit homes are incentivized to divert revenues away from quality, while serving older and more disabled Medicaid-funded clients. Meanwhile, the nonprofit homes, a quarter of the industry, cultivate quality by targeting, marketing to, and admitting the more affluent private-pay, privately-insured, or Medicare clients."
Just asking b/c if you really don't want to leave HER, but need help, maybe the answer is the 2 of you moving to an assisted living apartment, where she can get the care she needs and you can be free to come and go.
I know of many couples who have made this choice. Most of them kept the 'family home' renting it to family--or whatever works, with the idea that once the sick member of the marriage needs MORE care, or passes away--the healthier if the two can return home.
In a lot of cases, the CG dies before the one being cared for. I think it's about 35%---that's a lot.
Come back and add to your story, so we will know how to best respond.
BTW, it's NOT wrong to want your own life, and 24/7 CG is brutal on even the healthiest person.
You are probably more than burned out and are just coming to the realization that you can't continue on like you have been, and that's ok. We're all human, and we all have our breaking points. So instead of "leaving," perhaps it's time you get serious about finding the appropriate facility to place your wife in, so you can get back to just being her husband and her advocate, and let the rest of the 24/7 care fall on folks better equipped to deal with her care.
I'm sure you've done a great job so far, so don't beat yourself up because you're now at the point of having to place her. You matter too, and while it will be hard to place her, in the long run you already know that it's for the best, and is what needs to be done.
I wish you both the very best.
Placing her in Memory Care is a difficult decision, one that is not made on a whim or spur of the moment. It takes planning, thought and care.
It amazes me that care Facilities either Memory Care of Assisted Living are staffed round the clock with people that are trained, many get educational hours to keep their certification current and valid yet some how "we" expect or are expected to do the same in the home with no one usually to help, no equipment and a house that has not been built to accommodate someone in a wheelchair or using equipment.
I based planning on moving my Husband to Memory Care when it came to SAFETY. That was the one thing that would have made the decision for me.
If it was no longer safe for HIM for me to care for him at home...
If it was no longer safe for ME to care for him at home....
I would have made the difficult decision to place him.
other people have other triggers that would be the factor that would place their loved one. Toileting, violence, unable to transfer....
YOU make the decision that is best for YOU.
If you are physically, mentally, emotionally exhausted you can not continue the way you are. It becomes dangerous. Here we are back to SAFETY again.
Placing her is not giving up. It is accepting that you can not do this alone, safely.
No one WANTS to go to a Nursing Home, Memory Care but sometimes it is necessary.
The reality of the situation is that you can no longer care for your wife at home. Is it 'wrong' for you to place her? No, of course not. In fact, it's wrong for HER to 'refuse' to BE placed and by doing so, placing such a huge burden on YOUR shoulders. Being the sole 24/7 caregiver for another person with a ton of needs is TOO MUCH for most people to handle, and there is no shame in admitting that. I could never do it for my mother, so she lives in Memory Care Assisted Living now, and regular Assisted Living before that.
If you are asking if it's 'wrong' to leave your wife, as in divorcing her or ditching her to fend for herself, well that's a horse of another color. You can place her first, make sure she's safe & cared for, and then decide what you want to do from there. Being overwhelmed with her care as you are, I'm sure you're having the 'fight or flight' reaction and 'flight' sounds like a mighty good alternative right about now, especially since she's being stubborn about placement.
Try to remember this: there are TWO lives here that matter, not just hers. YOUR life matters too. Sometimes we get so caught up in worrying and caring for the sick family member that we lose ourselves in the process, forgetting that WE matter too! Try to regroup and make a decision that takes BOTH of your lives into account.
Wishing you the best of luck.
Every burnt out caregiver wants to run away including me. But a smart plan has to be in place…start to tour nice facilities nearby. If she wanders & has behavior problems, a nursing home would be best. They’ll put an ankle bracelet on her & take care of her. You deserve a life too. You can visit her as much as you want. Then you’ll change your screen name to “Youngman” Hugs 🤗
If your wife cannot do for herself and has dementia getting placement in a nursing home is not her decision to make. I've been in senior homecare for a long time and have worked for more people than I can remember. I never had an elderly client on my service who was agreeable about going to a nursing home. Even the ones who were invalid or completely out of it with dementia.
It is not wrong for you to want to leave. Everyone who's ever been a caregiver has wanted to leave at one time or another.
If caregiving for your wife at home is no longer possible or safe then the only alternative is a nursing home. Do what's right and find a nursing home for your wife.
In this life doing what's right does not always make yourself or others happy. The right thing isn't always what everyone likes or wants.
Your wife doesn't want to be in a nursing home. She NEEDS to be in one though.
What she needs has to come before what she wants.
I'm so sorry for the situation you're in. Please try to remember something else too. Your life and well being is just as important as your wife's.
You're probably looking for justification into making the decision for placement. I think you know what you have and need to do.
Blessings to both of you.
Man was caring for his mom, was away from home and was pulled over by cops, Cops could not get out of the car before he started firing at him. They fired back, hitting him, even though he was hit, he still continued firing on them until he collapsed by his car and died. The shootout was caught on police video.
This happened a few years ago. The female deputy was injured but recovered, the male deputy uninjured, The female deputy left the department and is now with another department.
Before u place her though, speak with an elder lawyer. Medicaid allows for assets to be split. Wife's split gets spent down then Medicaid is files for. You remain in the home with one car. You get enough or all your monthly income (SS and pensions) to live on.
Most states have Nursing Home Waivers. This program will pay for home modifications and equipment to make care more manageable.
https://www.assistedliving.org/what-is-a-medicaid-waiver/
Do not know the relationship you had with your wife during better times. If it was strained then, the demands of caregiving may be unbearable.
My husband was in a nursing home 7 1/2 years. It was agonizing for us both as I watched care steadily decline as the nursing home industry changed. I could abandon him to their neglect or fight constantly with regular complaints to State, complete with video evidence of neglect, Found out that State does not enforce Centers for Medicare and Medicaid Regulations.
Placing someone in a nursing home is a heavy decision. If you still love your wife, you will have possibly as much stress as you do now.
A Nursing Home Waiver may allow her to stay home by giving you assistance that allows you a manageable life.
Also, majority of patients especially the ones they label trouble just because they ask for help too many times or question.
Thos patients will get meds for so called depression and anxiety which is what they'll tell you. Your loved one will be kept medicated not for loved ones sake but to make it easier on the help.
I know when you visit to tour the Nursing Homes, theyoom pretty and you're told what you need to hear but blieve me. It isn't what you see..
I understand burn out of feeling stuck with having to take care of someone but you wouldn't want to go to a Nursing Home Either.
Check with your Insurance and see if you can have Home Health where you'll at least get Aide coming to help with baths/Showers ans a Nurse come once a month to check vital signs..
See if your Ins pays for a Caregiver to come to the house.
If not, think about hiring Caregiver help or hiring a Live In.
You absolutely can't do it all on your own.
BUT I'd you have help so you have free time for yourself then you won't have Burn Out and your wife can live a longer and happier life in her own home.
Also, You can install cameras in the house so you are able to come and go while being able to check on her anytime from Your cell phone or laptop computer.
I installed Nest Csmeras which are awesome and not hard to install.
Prayers
1 - In-home help from others. Adult Day Care, respite in a nursing home, and/or in-home help from others can ease your burdens while still living at home. Ask family, friends, members of faith community, and home health aides to help daily so you can get a break.
2 - If you have reached the point where you can not manage your spouse's care, it is time for residential facility care. Either you can move into assisted living type apartments together or move your wife into one. You can visit her as frequently as you can manage.
My aunt had a stroke in her early 80s but was able to come home. After the second stroke my uncle could not care for her at home. He regretfully put her in a nursing home. He came everyday and spent the day with her. She was fine, she was happy, she knew she was cared for and loved. When she finally died there were no regrets. He had earned the respect of everyone in the family (and everyone who knew them!) for how well he cared for her.
If he had skipped some days or visited half days it still would have been good. Neither of them wanted her in a nursing home but that was the best thing he could have done. He was able to sell the house, move to a smaller apartment, and make a life for himself.
If you have been married a long time you want what's best for both of you. You can have that by taking the time to find a good placement for her in assisted living or full care, whichever she needs, that is closeby. Let your children (or other close relatives) know what you decide and get them to help with the move, but not necessarily the decision making process. Make sure her new apartment or room has her personal things in it to look as much like home as possible. Arrange things to her liking. Make sure she is set up to videochat with friends and family and encourage everyone to do so. Once she settles in and makes new friends she might even like it.
Not all nursing homes/SNFs are 'government funded' organizations, so you may want to stop with the 'across the board' advice that's incorrect and prophesizing doom. Not everyone has the funds to private pay; not everyone is in good enough physical condition to be accepted by Memory Care ALFs or other such facilities. We don't know what the OPs situation truly is.
Any kids in the family willing to step up and help you out? Not only is she your wife, she is their mother. A little respite for you on a regular basis might help a great dea.
My experience is depends on the administrator, management company, and whether a Real Estate Investment Trust (REIT)owns building.
During 10 years with my family members, there were 6 administrators for one nursing facility. Two were great, one medium, three horrific, lying monsters. Management company changed 3 times and REIT who owned building changed twice.
Always difficult to choose as all can be great one week and then building is sold, new management company hired by REIT, and new administrator hired by management company.
In Texas, Health and Human Services, charged with enforcing Centers for Medicare and Medicaid (CMS) regulations bury their heads in sand.
If I reach a point where nursing home is my only option, will end it all.
She has been quite happy there. They had no Covid cases during the various surges and have received a JD Power award. She is now in hospice and when I last visited there were 2 nurses monitoring her. They know her very well and seem to genuinely care. Yes, I pay a fortune each month but I feel comfortable that it is worth it.
So, there are a few facilities in Texas that provide exemplary service.
If, however, your wife can attend to most of her needs independently, you may get by with spending fewer days at the nursing home with her.
Again assuming that she is very dependent upon your care and the staff's care, spending time with your wife daily for a few weeks should allow you to judge the kind of care she's getting, and if it's good, you might be able to skip a day now and then, as DrBenshir mentioned in his post.
I agree with DrBenshir that if there is no other good option, you should choose a nursing home (they are now called Skilled Nursing Facilities-SNFs) close enough to your home that you can at least visit her daily, then choose the best of the close ones. Usually the better ones do not accept Medicaid (Public Aid) patients unfortunately. We have one decent nursing home (SNF) in my town (in central Illinois) and it's the only one with good patient ratings online and by word-of-mouth. If my wife would have had to be there long enough that we would have run out of money, she would have had to be moved to a Medicaid facility, and that would have meant poorer care.
Other people have responded to your post by suggesting there are alternatives to nursing home (SNF) care that may be better, and I agree. SNFs are extremely expensive, unless she qualifies for Medicaid, in which case, they would cover her bills including medications. Another consideration with putting your wife in an SNF is that each one, at least in Illinois, assigns one primary doctor to each patient. That doctor sees the patient at intervals, like once a week or once a month. My experience with my wife being in NSFs is that her physicians were relatively unconcerned about my wife's care. She was unable to see her private internist due to SNF rules. That was bad for many reasons.
I'm a bit more stringent than DrBenshir about how often I think that you or a family member should stay with your wife if she goes to a nursing home. I think you should commit yourself to either be with her daily for as long as you can stand it on each visit, or make sure a family member shares that duty. Whether a patient is in a hospital or an SNF, daily personal attention from a visible family member is, I think, the only way to ensure at least adequate care for the patient IF the patient needs total care.
Although, as I wrote above, if your time with your wife in the SNF convinces you that she is getting good care, maybe you could skip a day here and there and rely on the staff, then check with her to see if she thinks she is getting good care. If she doesn't think she is, then you should resume daily visits or share that duty with a family member.
As for other alternatives to putting your wife in an SNF, homecare is what I would recommend, and hiring an accredited agency is preferable to hiring your own private caregiver. I will finish in another post.
By hiring your own caregiver independently, you would have to purchase liability insurance in case s(h)e gets hurt, pay her/him yourself and comply with the federal government's withholding tax rules, find a way to cover that caregiver's absences and days off, which would mean hiring at least two private caregivers, and other problems, such as firing a bad caregiver and hiring another one, not to mention finding good caregivers in the first place, based upon recommendations from a reliable source, such as a personal friend who knows a good caregiver.
My recommendation, if your wife needs constant care, is to hire an agency, comply with their rules, with no need to worry about paying for workman's comp/liability insurance, etc. if you would hire private individuals. Of course, just as with SNFs, the problem is finding an agency that has good ratings, and one that is willing to replace any caregiver that doesn't meet your expectations. In Illinois, most Homecare agencies are experiencing staff shortages, have trouble hiring, and the people they do hire are inexperienced. Of the three agencies for homecare in my area that have been recommended by agingcare.com, two had very bad ratings. The third has a long waiting list to become a client of theirs and they are short-staffed and trying to hire, then train, new employees. Hopefully, in your area, you would have better luck.
I apologize for being long-winded and repetitive here, if you've even read this far. I agree with everything else DrBenshir wrote. I wish you the best for your wife and for you in whatever decision you make. I have chosen to stay at home with my wife, even though I am often depressed, tired, and at my wit's end. I hope to never have to send her to an SNF. If I did, I would force myself to be there with her as long as I could every day anyway, and I can do that at home with much more comfort despite the frustrations. I am by no means the best caregiver, she deserves better, but she also does not want to go to a nursing home and I agree with her opinion. Best of luck to you, Mr. OLDEMAN.
I am getting very close to having to find some place for my mother ( we live together ) .... I've never liked the term dementia... I hate it.... but it is what it is, and it seems to be progressing faster and faster. She has been so nasty lately ..... I am retired and here all the time for Mom, took a week off for a vacation last week, hired a private caregiver for daytime and 39 year old daughter who lives with us was here for her after hours and at night. Mom was so very nasty to my daughter and had her in tears. Daughter is the sweetest person you'd ever meet. Honestly, it doesn't matter that it's "dementia"..... there's only so much we can take. I understand the OP.... just because one hopes to be with their loved one to the end, doesn't mean it is always possible. And as a young 67-yr. old, I cannot handle much more of this. BUT, we cannot afford ALF or caregivers at home ..... So those who keep pushing it need to understand that not everyone is made of money and can afford it.
Here are excerpts from the article:
Management and Performance in US Nursing Homes
https://academic.oup.com/jpart/article/28/1/33/3805969?login=true
(Note: I copied and pasted this from the article since it was very long)
"For-profit “Medicaid mills” serve poorer, sicker and less informed clients and divert resources away from services (Castle and Shea 1998; Harrington et al. 2001; Lemke and Moos 1989). Meanwhile, nonprofit providers tend to cultivate quality, which helps attract more informed, affluent clients. Nonprofit homes have better physical environment, equipment, and resident control; they evoke fewer complaints and deficiencies (O’Neill et al. 2003; Santerre and Vernon 2005).
Five-star ratings of quality were developed (CMS n.d.a) based on a complex formula using data on staffing, regulatory violations, and other factors (Thomas 2014). Similar to other government inspections, nursing home inspections and star-ratings combine both archival (regulatory) and perceptual (observation-based and self-reported) data (Andrews, Boyne, and Walker 2006b).12
Nonprofit nursing homes have a significantly lower percentage of residents on Medicaid (with a sizeable 10 percentage-point magnitude) compared to for-profit homes. Additionally, as facility age increases, the Medicaid percentage goes up. Staffing is significantly lower in facilities with more Medicaid residents. Finally, as the poverty rate and market competition increase, so does the percent residents on Medicaid.
In competitive markets, facilities compete for non-Medicaid clients, whose cost-to-reimbursement ratios are attractive for providers. The focus on innovation may result in a competitive advantage, enhancing the facility’s reputation, and attracting healthier, more informed and affluent clients.
Our findings on ownership are particularly interesting. After controlling for management, ownership in our models may be capturing management practices related to resource allocation and organizational priorities. In the archival models, nonprofit and public ownership is associated with fewer violations and higher star ratings. Nonprofit homes also serve fewer Medicaid clients. These findings are consistent with the theories of nursing home ownership and performance. The for-profit homes are incentivized to divert revenues away from quality, while serving older and more disabled Medicaid-funded clients. Meanwhile, the nonprofit homes, a quarter of the industry, cultivate quality by targeting, marketing to, and admitting the more affluent private-pay, privately-insured, or Medicare clients."