Unfortunately, my trust in nursing home care has been strained, prompting me to contemplate bringing my sister home as a last resort. Enduring weekly challenges, my experiences have been disheartening, marked by staff dishonesty and incidents causing harm to her.
Each visit is a cause for concern, as I witness her descent into severe depression. The once vibrant and joyful spirit she possessed has withered, leaving her nearly speechless and in tears daily, expressing a strong desire to return home. Despite being in the current nursing home for over two years, the situation is reminiscent of the deplorable conditions in her previous facility, where my complaints resulted in multiple fines against the institution.
While my family member is purportedly considered a favorite in the current facility, I refuse to accept neglect as part of that designation. Initially overlooking the staff's rudeness for the sake of her well-being, I now characterize this facility and experience as a nightmare rather than a home. Highlighting concerns such as her enduring prolonged periods in soiled clothing, unsanitary living conditions, infestations of vermin, insufficient attention to hygiene, instances of missed meals, overmedication, and lapses in pain management have resulted in my being characterized as "difficult."
In sharing these experiences, I am open to recommendations for reputable nursing homes in the Denver area. If a satisfactory option does not exist, I am inclined to bring her home, understanding the significant effort involved. I feel like I can provide better care and allow her to enjoy her final days in a place she calls home.
As I contemplate whether to bring her home after 7 years in different facilities, I'm also seeking guidance on the preparations and considerations necessary before I bring her home (she has multiple health issues and requires a high level of care). The prospect of going through this process is daunting for me. I am 65. I would greatly appreciate any insights and experiences anyone can share.
Would it be possible for her to be moved to a different nursing home?
Am I correct in assuming she's on Medicaid? If she is then the choices of facility will be very limited.
If your reporting on this facility has resulted in fines but no improvements on what sounds to me like blatant violations of basic human rights, did you ever consider consulting with a lawyer on a possible lawsuit on the facility?
You say that your sister is in her final days and in decline. She has also been in a nursing home for the last seven years. It's not a case of just bringing her home. When a person has been institutionalized for that long it's a long road to transition them from facility life to life in a private home.
You don't mention that you have any backround patient care. I will tell you honestly. I was an in-home caregiver for 25 years. I've worked for families who brought a person "home" from a nursing home after a long term stay (far less than 7 years) with the best of intentions and it ends badly even with outside help coming in.
Your best bet is probably to get her into a better facility. Or a small medical group home if this is available in your state. Or an assisted living if that's possible. I'm speaking from experience and would not advise you take her home with you directly after she's been in residential care for the last seven years.
Wanting better care +
Providing all the care yourself does not automatically = better care.
- Home can work out. You may be patient, strong, kind, organised, capable & much more. You may feel useful, rewarded & forfilled in this role.
- Providng 1 : 1 care ratio will indeed be more than any facility.
On the other side, you could burn out fast.
- You will also be all of the other staff: manager, cook, clearner. Will it leave enough time to be the care attendant you want to be?
- How much extra help are you planning? What could you outsource or make easier? Eg meals delivered, cleaning & linen service, nurse or Doctor home vivisits. An Aide hired 2-3 x week to assist. Sitters for when you go out.
- Would you have more trust in these extra helpers if you were the co-ordinator/manager?
Some final thoughts to ponder, if you could spend all your time at home, could you visit & spend the most of every day with your sister where she is instead? Or if you could provide financially for extra services to your home, could you pay for a 1:1 Aide where she is?
Final questions. Sorry, hard ones.
Deep down, are you really wanting to cure the depression, PD or whatever ails her? Is this grief?
When a person has been in facility care for as long as the OP's sister has, it's not an issue of trusting the aide care they hire.
After that long, there needs to be steps taken to transition her from facility life to life in a private home.
AgingCare appears to be a community where individuals are willing to pour knowledge, experience, and support into the lives of others. Most posts I have read indicate that the person sharing is doing so without fear of judgment or attack.
I stumbled into this forum after a google search and reading positive and supportive discussions about other caregiving topics. I am profoundly grateful tonight for the feedback I've received. Some very good points, including yours, have been raised that will help with my decision.
Thank you for sharing your thoughts!
AgingCare appears to be a community where individuals are willing to pour knowledge and support into others' lives, and feel at ease sharing without fear of judgment or attack. I stumbled into this forum after a google search and reading positive and supportive discussions about other caregiving topics and am profoundly grateful for the feedback I've received thus far. Some very good points, including yours, have been raised that will help with my decision.
Thank you for sharing your thoughts!
I’m not denying that times are tough and facilities aren’t that great, but could you tell us a bit more about what you think is wrong. Just for example, we’ve had people complain that showers weren’t provided daily, when in fact daily showers really aren’t necessary. It is virtually impossible to prevent theft in facilities, and occasional staff ‘rudeness’ may be forgivable. Your complaints about “prolonged periods in soiled clothing, unsanitary living conditions, infestations of vermin, insufficient attention to hygiene, instances of missed meals, over-medication, and lapses in pain management” sound appalling but might also be less dire than they read, especially if the lapses are infrequent. You know that you are viewed as ‘difficult’, and perhaps you have 'private hotel' standards for a free Medicaid service. It’s worth thinking carefully about what is involved, before you are quite sure that you can do better. You might get snappy yourself, it’s a very stressful thing to undertake!
Supplementing her care, rather than taking total responsibility for it, could be a good option to think about.
Can you transfer sis from wheelchair to car and back again? Can you heave a 45-pound wheelchair in and out of a vehicle? Can you toilet her? Clean her afterward? Shower her? Transfer her from wheelchair to bed and back again? Change her bed linens? Wash them as often as necessary? Dress her? Undress her? Manage her meds? Administer meds? What medical supplies does she need? How will you get them? Where are her doctors? How will you get her there? Who will make her appointments? Where will she eat? How will she exercise? Who will stay with her if you go out? Can you shop, cook and clean while doing all of the above and even more? Can you adjust to having no privacy, no free time, no friends (they'll disappear when they realize you're a full-time caregiver with no time for them)? What's your exit plan? You need to plan your escape before she sets even one step inside your home.
Those are only some of the tasks confronting you. I wish you the best, BUT. It usually doesn't end well for the caregiver.
Unfortunately, finding a suitable nursing home for her poses a challenge due to my perceived difficulty and the generally dismal conditions in many Medicaid facilities, exacerbated by staff shortages and low wages, particularly post-Covid.
Being labeled a "difficult" family member adds another layer of complexity. My concern stems from witnessing substandard care for my sister, such as unclean clothes, inadequate nutrition, infrequent showers, and neglect in the cleanliness of her living space. The lack of communication from her physicians regarding changes in medication until a reaction occurs has also been distressing.
Leaving my sister after visits triggers a noticeable shift into depression, with mentions of joining our late mother. While our mother was in a nursing home, she asked to go home to die. I couldn't figure out how to do it. Her nursing home convinced me that I couldn't do it and to leave her there. It is my biggest regret. My decision still haunts me, and plays a significant role in my contemplation of bringing my sister home. Ensuring better care for her is at the forefront of my thoughts.
I apologize for the lengthy response, but my heart is burdened tonight by the challenging decisions I'm facing. Your advice is genuinely appreciated as I navigate this complex situation. Thank you!!
These days, in many locations, someone can make up to a couple dollars an hour or more as a barista or working in fast food. These aren't the easy jobs something but their infinitely easier than caregiving. So even for the same amount of pay why would someone choose caregiving unless they can't get another job or find them selves with a calling for health care.
Find the best facility you can and augmented with private caregivers. Please listen to the advice of those who have previously posted and have experience with this situation.
Other then he, it has mostly been a revolving door with employees. They get through orientation (with Dunkin Donuts and Coffee as a thank you) only to stay a week or 2, then they're gone
It helps that competition for workers in this field, be it LPNs, STNAs, Aides, etc is fierce among these employers. So fierce, that a few have quit and got a job elsewhere, ( even some of the kitchen staff 😆).
I have not directly been in this situation, but dread it if it comes up.
About 7 years ago, I was thinking of bringing my Mom to my hometown and in a nearby nursing home. I asked a Geriatrics nurse I know, "which is a good nursing home/ SNF anywhere in the area?". His answer " there is no such thing as a "good SNF" anywhere around here".
If you bring her home, 2 things to consider : 1) how well do you get along with her etc. Is being around her going to be a 24/7 strain to you? 2) How are her medical needs? How will you get the medical/ nursing care coverage needed? It is possible to hire in home LVNs or RNs but is expensive. Also, from what I hear much of that has to be out of pocket cost if you want 24/7 coverage, that Medicare/ Medicaid wont help with such home coverage (others - correct me if I'm wrong with this part).
As others suggested - are their options of an assisted living / memory care private place, which can accomodate nursing care? You may want to look around for that. While some assisted living places have a strict rule that residents cannot stay once their medical needs exceed a certain level, I think there is variability in that. Some AL places may let a resident stay as long as you can get supplemental coverage from outside to come in and help out.
E.G. for my dad currently, he gets the basic care from AL staff, then we have a private pay caregiver from an agency come in from outside a couple times a week for extra help with his twice a week bathing, shaving, cutting toenails etc. In addition, he has some leg wounds/ poor vasculature , so a Medicare covered home nurse comes twice a week to check on these wounds/ dressings, and a medicare covered OT helps with some dexterity issues with his hand. The Current AL is fine with a resident staying and having this extra help, but not all will. This AL also is fine with Medi-caid covered residents.
But for me, this is preferable, with a private room, relatively good care, plus a bit of medical type help.
A stereotypical nursing home with shared rooms, poor staffing ratios etc as you allude to is not as nice. But finances can weigh into the decision unfortunately too.
The other issue as others have alluded -she has been "used" to facility living for a number of years. Depending on her mental state, if you bring her back home, then later consider having to go back to a facility again, that transition may well be really hard after being at home....
At home care is not always better, and often can lead to higher degree of neglect.
On the flip side I had the very rare opportunity to go out last night. I spoke to a good friend who works at THE BEST LTC facility in my area. It’s so highly regarded that it’s almost impossible to get someone into their limited beds.
She told me that even at her facility the understaffing is to the point of patient neglect. This has been what I have heard about every facility I’ve looked into, but I was shocked to hear it about this particular facility. So where does that leave us as family members?
Im starting to think that the only option is to place our LO and then be at the facility daily making sure they are being cared for. In my case it’s not going to make life much easier. It’s such a difficult dilemma.
You bring up a good point that I have been thinking of, and most people dont know until its too late : that the nicer assisted living facilities in each city tend to have long waiting lists!
I see every so often a thread pops up titled " What do you wish you knew before becoming a caregiver". My answer as a son managing things (yet not being direct hands on caregiver) is this : I wish I knew that nicer facilities have long waiting lists, sometimes a year or more!! And so, a wise child of an LO/ POA should start planning way ahead! If you can start to see the LO dropping off in independence about 5-10 years ahead of time and would consider an AL as the next step when needed, start to tour AL places about 5 years ahead of time! FOr nicer ones that would be feasible, put in deposits for waitlist!
I have also noticed that some of these nicer ones/ nicer reputation/ long waitlist places are not necessarily more expensive either!
There is one nearby that was founded many decades ago as a retirement home for city teachers. It has upheld a strong reputation for decades since. The cost is very reasonable and similar to most places. However due to its reputation, the wait list is 1 year or more!
There is another one that was founded by a church, and still governed by the church. They will give preference to incoming residents of that denomination, but otherwise are open to anyone/ all religions. The facility has a very good reputation, long waitlist, and for those who get in, the rate is very reasonable.
I wish I knew these things many years ago.! Its kind of like daycares and pre school in my area too! For the nicer ones, you pretty much have to put your baby on the waiting list to get in, prior to birth!
Can your sister afford to pay for 24/7 in home care? If she is in a NH for 7 years already, she's probably on Medicaid. Therefore you will not get that much help for in home caregivers on the taxpayer dime.
Does she have hospice? If she is in her final days and in pain, she should be. And I will say this, there is no time frame to predict how much time your sister has left. Are you prepared to care for her indefinitely because dying does not happen so quickly these days. Many people on this site have uprooted themselves to care for their LO because they were told death was imminent and two years later they are still at it.
You need to really think about this, it is a major life changing step for you at a time when you are not so young yourself (I'm 68 and I am not what I was physically 20 years ago and couldn't do it).
Truthfully I really hope you can find another facility that is better.
Best of luck to you.
She's kicking up a supreme fuss, as expected, and will give the facility a run for their money--we already know that. And she's going to hate it.
But she's going and that's that.
It has taken 3 adult children working almost FT to allow her the choice to live at home. But she is so demanding and difficult and the 'kids' (ages 75, 72 and 66) are fried.
If I were you, I would spend my energy finding a facility you can move her to.
Keeping a LO at home is often just not the best scenario. Are you prepared for the constant, never ending needs of ONE person in care? Your sis has been in care for 7 years. Going back to an 'in home' living situation could prove so hard for you, you get sick and start to fail.
Putting a LO BACK into care, once they've been out is daunting and sometimes, just flat out impossible.
Before I moved her into my home--I'd work really hard to find a better NH. Bringing her 'home' should only be for the most dire situation.
You do not inform us of her current condition and of her needs, but this is a very long time in long term care, and I can only imagine that her needs are substantial.
Without knowing those needs I can in no way come to a conclusion about how reality based any decision to take on full time 24/7 care of your sister may be.
You say that your sister wants to go home.
I would tell you that it would be challenging to find ANYONE in LTC who does NOT want to go home.
You tell us this:
"I am inclined to bring her home, understanding the significant effort involved. I feel like I can provide better care and allow her to enjoy her final days in a place she calls home."
(What do you mean by final days? How final are they? What is the prognosis?)
If you are so inclined, why would you come to a Forum who doesn't know your sister, her diagnosis, her current condition, her prognosis, to ask for our opinion?
We don't know her at all. Nor how much she is able to do for herself, or willing to do.
We don't know YOU or how strong you are, how capable of doing the 24/7 care for someone.
You seem to indicate this is "final days" and you must be aware of some end-date? What is that date? How long would you be expected to do this care?
You have described your reasons for this move as being, quote:
"my trust in nursing home care has been strained, prompting me to contemplate bringing my sister home as a last resort. Enduring weekly challenges, my experiences have been disheartening, marked by staff dishonesty and incidents causing harm to her."
You have not been specific about the dire circumstances and outcomes of this "strained" care.
I give this a no vote. For your own sake. For the sake of your sister, for whom a return to LTC (which seems likely to me) is almost certain.
BUT you are an adult and must make your own decision. I always knew my limitations, knew I could never provide LTC for my brother; the question would never have occurred to me, tho thinking he was getting substandard care would have destroyed me.
I would only ask this of you: IF you make an attempt to do this tell your sister that you have never given 24/7 care, and do not know realistically if you have the strength to do it, no matter the love you bear her. Tell her that you and she must reassess every three months on the calendar whether or not the move is working for you BOTH. Honestly. And that when it isn't working for one of you, the a return to LTC will be necessary.
I wish you good luck in your decision, even while believing in my heart such a move would be disasterous.