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I started working with a great company that helps the disabled get medical equipment and had to resign due to missed days for appointments, call offs from caregiver, ER visits, urgent care and the list goes on. I just don't know what else to do. All the reviews I read from nursing homes and adult family homes qualified to care for her and accepts Medicaid...Horrendous. I dont know what to do anymore. I've cried so many tears of frustration and sadness I have none left. Any advice would be appreciated.


I've tried care managers, geriatric care managers, talked to nursing homes, home care agencies, adult family homes for everything from day centers to respite to full time caregivers. Nothing has worked longer than a few weeks for the last 5 years. Rinse, repeat. I'm so disgusted with this broken system. The state will pay upwards of 7 thousand a month for her to be in a poor performing home that has been sanctioned for bedsores, dehydration and the like but will not pay for an agency to give me a full time person at home. I'm just so tired. I keep praying, trying to be grateful for my blessings but I'm so angry at this point and it feels like it never stops no matter how hard I try. At the urgent care again due to her developing a knot on her back when her air matress pump died and waiting for the new one to arrive. Took her to her doctor who said watch it. Well it got bigger and I sent a pic after the SECOND visit to see him for the sore that started on her elbow after 24 hours with no air mattress and her leaning on her arm to get "comfy". She's bedridden and totally dependent, left side immobile. Guess, just guess where the elbow sore is??? And her neck is getting weaker after me reminding her like 100 times a day, no exaggeration to keep her head up and back. Tired... angry...and exhausted...

You guys are amazing!!! Thank you so much for the positivity and all the advice and understanding. I think I will take some extra time and keep looming around for a home for her. I just feel so guilty for even considering it. but we have to find a comprimise. I will continue my search.
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Reply to anerhill
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Hello. I work in the Skilled Nursing care/nursing home field (Physical therapy and Rehab). I agree that one should be very careful and discerning about placing a loved one in a nursing home. There have been some good suggestions about how to assess a good setting. I'll add a few things that I also would do if I were considering placing a parent in skilled nursing.

1. Find out if the facility is owned for profit (by a corporation) or not-for-profit. Not-for-profit facilities MAY have less staff turnover because they are less profit driven and less prone to make cuts in services, less likely to have overworked staff and be able to retain quality employees. The better staffed, the better paid, the better morale a place has and less turnover, the more likely the place will be a better functioning facility. Is the nursing staff friendly and receptive. The people your loved one will have a great deal of contact with are the Aides. I've seen places with good Aides (conscientious and friendly) and bad Aides (rude, rough). Check Medicare ratings of the facility. Every facility has a yearly inspection and the results are public (online) or you can ask to see them at the facility (should be readily available).

2. If you do decide that you can no longer hold up under the stress of caregiving a dependent parent (which is a monumental task, by the way) and are considering placement in a nursing home ... my advice is to be a very visible and involved family member. Get to know the staff and the Aides and try to develop a good rapport. Demonstrate to them that you are involved and watching the care. It's only human nature for staff to put their best foot forward if family is closely involved in the care. This doesn't mean criticizing or nit-picking, but working constructively with staff to make things better and also recognizing and expressing appreciation where your parent is getting good care and attention from staff. Sometimes having someone else care for a parent will free you to have the good relationship with your parent in their remaining years. I've seen many family members themselves become part of the nursing community when they visit their loved ones -- they also get to know other residents and their families which lends to a sense of community. I agree that one has to be very careful in placing a parent in a nursing home, especially a person who cannot speak for themselves. The good places are there, and though they're not perfect because (as someone said in a previous post -- the parent will have the same physical issues in a nursing home as in a home, such as potential for skin breakdown, immobility, etc), one might be able to find a more workable situation for you and her. Caregiver health is often a casualty of the enormous stresses on you. Think about your health and wellbeing as well.

Whatever you decide, I wish you the best.
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Reply to JD654321
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ANERHILL; HI !! I think if your moms social security is under a certin amount with all her bills included that you can find ways to be compensated for you giveing your mom care I am not sure about the phone numbers but I am pretty sure it may be affilated with medicare & medicaid its worth looking into ....or can your mom aford to pay you....or maybe a job with more flexible hours ....I had a friend with the same issues she was looking into being paid to care for her own mother ..and it REALLY IS A THING help is out there...Also try Catholic charities...they can at least lead you in a direction to get help careing for your mom like dr. Visit rides ,and housework help, also assistance with medical supplies ,Catholic charities is a good way to get help and advice ! Good luck ! I will say a prayer for you ! Your not alone ..is she eligible for Hospice?? This is a really tough situation but if shes bedridden sounds like hospice maybe a good idea for you guys...dont let the words hospice scare you... think about COMFORT FOR YOUR MOM ...hugs to you
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Reply to Lorraine12
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As you yourself have experienced, major issues can develop quickly. I think we expect that a paid facility will not have these same issues. It is an unreal expectation in my opinion as they are dealing with the same person that won't hold their head up and back and will lay on their arm even when you move them.

I read time and again 24/7/365 care but have come to the conclusion that is not possible, not even when they are home. Having someone awake and available 24/7/365 to help is far from 24/7/365 care. However, it is as good as it gets, unless you have millions of dollars to hire an entire staff, bed sitter, cook, housekeeper, runner, gardener, etc. Because it takes alot of people to ensure all the needs are dealt with.

I say that because I think there comes a time when it makes sense to stop sacrificing our own lives and wellbeing to hands on care of another.

My experience is that ratings on the internet tend to be wrong, 5 star dump, 2 star wonderland type of situation. You have to physically go, does it smell, is it clean, how do the patients act, are they relatively contented, is the staff fresh looking or wilted, what does the food look and taste like, what is the staff to patient ratio and anything else that is important to you. Also, visit several times and just drop in, they can showtime as well, so you want to see how things are morning, noon and night when they aren't putting on their best face. It is time consuming up front but will save time later.

One bad day does not make for overall unacceptable facility. We all have them and things happen suddenly with the aged and infirm, be gracious on those days and grateful for the good ones. Talk to other "visitors " at the facility, how do they feel about the care their loved one is getting.

You matter in this journey as much as your mom, please find a way to get her cared for so you can go back to being her daughter and maybe share some more good times or memories before her life is over and you are left a complete wreck from it all.

HUGS for all you do! She is blessed to have you for a daughter.
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Reply to Isthisrealyreal
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Invisible Nov 28, 2018
I have experienced the same thing. I still go over and visit Dad nearly every day in memory care where he is now receiving 3 solid meals and eating in a community setting. They don't do things exactly as I would and sometimes things get lost, but if he falls they find him a lot sooner than I would and I don't worry every night like I used to. We looked at a lot of places and ultimately a fall, followed by a hospital stay and then transitional care forced us to make a decision. It was the right one. You might also talk to social workers and get recommendations from friends/associates.
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You can't work full time and be a caregiver at the same time--put them in a nursing home then you can do it. If the person is 100% dependent on care..they need around-the-clock supervision and care.
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Reply to cetude
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The reviews were from the Medicaid and Medicare websites. She is on Medicaid and there's a shortage of caregivers for various reasons sadly. 2 states, same issues. Thanks for the feedback guys, i truly appreciate it.
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Reply to anerhill
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Invisible Nov 28, 2018
The shortage of caregivers is going to get worse as will the shortage of doctors. I gave up my "career" to take care of Dad. Before that I waited too long to give my Family Leave Notice at work to take care of Mom. She died and I was laid off 3 months later in a "downsizing action". Now that I am no longer the primary caregiver, I need to get my life back and find PT work as I used up my retirement during those years as caregiver.
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So sorry you are going through this.  Just a few suggestions on the longshot that you have not yet looked into them.  First, does she have Medicaid coverage?  if so, they should pay for someone to come in for the time you are at work.  I know you said they will not, but it is my understanding that they do--it may be different in different states though.  Also, maybe you can start visiting assisted living homes and centers and find one that will provide the best care you can find.  then, visit them daily and stay on top of them.  With that oversight, your mother will have the close to similar care (hopefully) that she would get with you working and taking care of her in the evenings.  It is true that, even in the hospital setting, the family has to keep on top of things to be sure their loved one gets good care and adequate attention.  I have experienced it many times.
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Reply to jennys
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Have you actually visited these facilities in person? I’ve heard that former employees who have an axe to grind with a facility will blow up a site with bad reviews. They will ask family and friends to post one star reviews so the facility winds up with a bad rating. In any case, a personal visit/tour is the only way to see for yourself how a facility actually operates. My mom was in a no-frills Medicaid home and she got the best care ever.
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Reply to Ahmijoy
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Are you very sure there might not be a decent facility possibly available? She seems to not be thriving in the home environment and you are suffering also with this situation. I have had family in less than ideal nursing facilities as well as visited some. I also have experienced the opposite. I do feel badly for you but I wonder if you might be able to find one that could work. Since you have worked in the medical field perhaps you might find more help. Caring for the aging is difficult and some particular homes may not be ideal but it could be conceivable that one might be worth a try. The more hands on one is for the patient proves to be helpful. I imagine you would be and you could regain some life back for yourself.
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Reply to Riverdale
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