Hello All!
I am a personal support worker currently working at a nursing home. There is a resident whom I have became very close with and he often confides to me that he wants to leave the NH and he would love to take a trip elsewhere. He says he could hire me as his fulltime caregiver and I have no idea what to do in order to make that happen and something inside me is telling me I should do it and give this man his last chance to live his life the way he wants to instead of wasting his life away alone in his room.
Right now my Resident is completely cognitive. We have full on conversations, he can walk a few steps, stand, everything a cognitive person can do except his ADLs which I can gladly take care of. He does not need any other nursing care other than meds. This man came to the nursing home WAY too early.
My resident has a rare progressive brain disease that basically kills brain cells. It is different in every case and progression seems very slow as he needs LIMITED assistance right now.
I am reaching out to you all to help me get this man out of this nursing home and to live his life to the fullest as I am 100% willing to do anything I can. Also did I mention that his wife is resistant to him leaving the NH and going on the trip? PLEASE HELP! And give me your input on whether or not I should do be his 24/7 live in caregiver.
Also I am in my early 20s if that makes any difference.
Thank you all soo soo much!!! :)
I really think we should just stop the thread.
A person with LPN training on the staff in a nursing home who doesn't know how to handle concerns about a potentially inappropriate placement? Bollocks.
A person who has just embarked on LPN training and has read the first paragraph of the ethics chapter, now: quite possibly. I'll agree to be charitable and believe this could be one trainee who has a heck of a lot to learn.
Including how many forms of dementia there are. But - you're right! Enough.
He has a wife who makes decisions. You are a hired worker which your employer would say that isn't the best thing for you to do for many reasons.
You will have a client like this but rarely. This here is none of your business and you will make it much harder on him feeding him hope. You could get written up or lose your job. Remember it was a hard decision for wife or family to make and you know nothing of the situation. You were hired to do the job caring for him there. This would be unprofessional conduct.
Your young and inexperience. So do your duties and give him the best of care and make him apart of his new home and new friends. For all you know he could be there just while she's out of town. Just because he said he will pay you don't mean he has that say. His health is a need to know and a nursing assist. Knows very little only what you need to perform your job. So don't do it! The wife would have to approve it and no you don't want to ask cause it wrong! This was probably a very very difficult decision with a lot of reasons. This is also probably based on insurance many other things! Customer service is for you to make him comfortable to his do home. Sorry that I'm going on about but only because your young. Now you can go to your head nurse and tell her what he is saying and ask her advice on how to handle it. He will in time be ok about it but he will always miss his homes. People go through the grieving process when they enter a facility. Some will be angry and maybe feisty which is rare. Some will cry etc but they except it.
That being said, you indicated the wife was “resistant” which implies you have had a discussion with her about her husband’s wishes? If yes, talk to her again and discuss finances, game plan etc - it’s often considerably less expensive to have around the clock care at home than paying a nursing home assuming your patient is self pay. You cannot offer 24 hr care - it’s unreasonable and unhealthy for you. Are you able to put a team together? Is your clients home set up to accommodate his living back at home ie separate bedroom etc? There are lots of things to consider and do not rely solely on the patient’s answers to these questions.
if the wife does not want him home, for whatever reason, you could request permission to take him out occasionally for day trips, the movies, a meal . . . (Assuming again as a hired care provider).
Lastly, provided you stay in this field, you are going to see situations similar to this many times in the future. You must find a way to maintain a somewhat emotional distance without compromising your compassion. You cannot save the world but you do have the power to brighten lives along the way! No matter how this turns out, your patient knows you care and that has great value!
Good luck!
We started seeing changes in Mom in 2005. Things an outsider would never notice.
My Stepdad passed away in 2010. The stress of his diagnosis, treatment and death seemed to escalate Mom’s symptoms. During my Stepdads illness I realized how much they had been hiding.
My Mom could no longer pay bills, keep up with her doctors appointments, follow a recipe. But oh man, she could talk a good game.
She was buying every magazine ever published, entering every sweepstakes, falling for every scam, and donating, donating, donating.
When my Stepdad became very weak from chemo he asked me to take over their finances. I can’t begin to describe the mess. He also asked me to keep Mom at home as long as I could.
Mom’s Doctor could never put Moms illness in a specific box until the last year of her life when the final symptoms appeared.
I had never heard of PSP. The Doctor described it as mimicking Alzheimer’s and Parkinson’s.
My Mom weighed less than 70 pounds when she passed away. She was still eating and drinking. It was explained to me that her metabolism was in overdrive.
This thread is particularly hard for me. My Mom was in a NH the last 2.5 years of her life. I could not handle her at home any longer. The entire 2.5 years she was in the NH she was plotting her escape.
The controlled environment of the NH was absolutely necessary in my Mom’s case to keep her mentally stable and safe.
The Aides, LVNs, and a couple of RNs were a godsend as well as Hospice near the end. One particular LVN that was studying to be an RN, she was my eyes and ears, even after she was transferred to another wing. She checked on Mom every day she worked. If there was anything she thought I needed to know, she called me.
I visited my Mom often. The last 1.5 years my sister hardly visited at all. It was truly devastating to watch.
My adult children, late 20s, early 30s, at the time, still can not wrap their heads around what happened to their Grandmother.
The OP asked for advice. Advice was given. Experiences were shared. It’s emotional.
I hope the OP hangs around this site. There are countless stories of caregivers struggling to keep their loved ones in their homes, stories of the grueling decisions to place their loved ones, and vast medical knowledge.
All of us jaded former caregivers were once young. I can only speak for myself but being young used to get me in a lot of trouble.
It was only tonight I discovered the link to private messages and found a few for myself. Someone signing in as Anonymous594015...I'm unable to send a private message back to you for some reason, so I wanted to take the opportunity here to have a word.
First of all, when I re-read my original post, it seemed, to me, that I NEVER condoned what the original caregiver was asking about doing. NEVER. I pointed out the multitude of issues from a variety of concerns. For those who jumped to the conclusion, that I was condoning it, you were /are mistaken. I have been so tired from my own caregiving that I was quick to defend/apologize and explain...but this highlights the dangers as well as the good of a forum like this.
More specifically, I am not weeding back through all the posts to find the original comment suggesting the caregiver seek out therapy. Anonymous594015 has leapt to the conclusion that I think therapy is only for individuals who are a danger to themselves or others or psychotic types. NOTHING could be further from that. MY point was/is that this particular, singular situation didn't mean someone needed to seek out therapy to have insights into their own behavior and desire, let alone considering if the person had funds for a therapist. The caregiver could potentially use some guidance from a supervisory person or from a more seasoned professional colleague...but suggesting they needed therapy was a bit of a reach IMO. And as I have reminded people more than once, this poster came here for feedback, they cared enough to ASK before acting. They are learning. They knew enough to ask.
On a more personal note I have experienced therapy myself over some time, years ago. Once with a therapist that did some harm in the name of doing good-- because of his own belief system that I was too young and naive to recognize at the time; another was a true blessing in my life. I have also spoken on the stigma of mental illness at an annual meeting of the American Psychiatric Assn. Therapy can be a godsend if one has coverage for it and/or can afford it. Not everyone can. It seems this topic really struck many nerves for many followers. Hopefully everyone has learned something from it.
Now the OP has come forth and stated that they are a SHE, and that the Patient "Older Gentleman" has PSP, which is NOT Only Degenerative Brain Disorder, but a Full Blown Autoimmune and Neuromuscular Complete Body Disorder much like Parkinson's Disease, but which unfortunately does not respond to the Parkinson's Medications, I KNOW, AS MY OWN FATHER HAD THIS RARE AND HORRIBLY DEGENERATIVE DISORDER!!!
Thankfully, we as a family did not ever have to put our Dad into NH except 2 short post hospitalization stints as he recovered from Aspiration Pneumonia, which ultimately did take his life. I would not wish this Diagnosis on Anyone, as it is so incredibly painful to watch someone die of this, and the OP has No idea what she would be getting into, it is that horrid.
However she is correct, my experience with my own Dad was that he had full cognitive functions right up to the end, although I am not sure this holds true of everyone with PSP. Caring for our Proud, Wonderful Dad was exhaustive and so Painful to watch him decline, which was an 8 year process, the final 2 years he was unable to walk unassisted, bathe, shave or even feed himself as his shoulders were blown out from so many falls. Luckily their were 6 dedicated kids to care for him, plus the employ of PSW's who came to the home to assist near the end. Let me tell ya, a few hours shift caring for him and you were shot! Most definitely not a 24/7 job for 1 single person, no matter how young or how fit!
The OP needs to back off and set up Professional Boundaries on this and Every Patient in the NH, it simply is not their place to interfere into this family like this, especially with someone with this Debilitating Diagnosis!
The Nurses Aides are a very important part of the convalescent and rehab team, and were instramental in both my parents care! Most assuredly appreciated and in my opinion, overworked and underpaid! So please don't go making assumptions on my part!
Oh how Wonderful it would be if we could indeed "break out" some of these lovely people from NH, who on face value do Not Appear to need to be there, but who unfortunately do. We Think how nice it would be to save them from the boredom and the daily grind of living there, but it isn't our place and they ARE there for a reason, even if it doesn't appear so to us at the time. They Are the
Paid Help, and are only there to do their jobs.
The OP is Young and Fresh, and doesn't have a clue of the real reason why the old man is truly there for, but he has made an impression on her heartstrings, perhaps a Granfather like feeling in that together, they can ride off into the sunset and fulfill his bucket list, just like in the movies, but we all know that this is not how the real world works now, isn't it?
I do "get" the OP's desire to "save him", as he is kind, intelligent, well spoken, so interesting and unfortunately very very sick. It may well be that his wife is all he has left in the world, and together he and the OP found a kinship that seemed Fantasmical, Unstoppable even, but it is a house of cards that would soon come crashing down upon them if the OP even thought twice upon acting on such an endevor.
Oh to be young and un-jaded by the ravages of Degenerative brain disease, and think that we could save the world, one Wonderful Elder at a time.........
And yet, We who have been in the trenches of Elderly Care for Many, Many, Many Years do know better now don't we? We do need to be the voice of reason, and not encourage this sort of behavior, no matter how kindhearted their intentions might have started out now, don't we.
I do wish the OP well, I hope her spirit goes on to make Wonderful and Positive Changes upon the world of those stuck in the NH system, as we all know how sad and lonely it can be, through no fault of their families, sometimes, there are just no other options for long term care, when families can no longer care for them at home. I wish the OP all the best, and may their kind spirit never be broken!
Gdaughter, as a LSW, You Especially should be "Teaching" (as you so appropriately stated) this Nursing Home Aide (as they are called in the US) or PSW to be doing the Right Thing, by suggesting that they Shut Down this Inappropriate line of (Not) thinking, and set them straight in that their Idea of encouraging this Gentleman any further into believing that they could leave the facility on a "Wild and Wonderful vacation" an then "living his life to the fullest" is nothing more than a pipe dream, that borders on Criminal, and is unduly Unfair and Cruel to encourage such inappropriate actions. I mean, how do they know that "money is No Problem" for this Gentleman, or that they could even fulfill such a position outside of the NH, it is just Naive and Magical Thinking on their part, and should never be encouraged to entertain such idea's!
The OP is Way Overstepping their Boundaries of their Medical position there at the NH, by ever even entertainingly such a notion, and while they may be young, caring and compassionate, their actions in filling the patients head full of the possibility "breaking out" of the NH is so incredibly immature and in appropriate, let alone beyond the scope of their Caregivers position there at the NH, they should be reported, let alone terminated if they continue on this line of thinking.
The patient has been placed in NH for a reason, which the PSW/OP Is Not and Should Not be Privy To, they Are Not a MD or even a Family Member, Therefore the OP/PSW should be encouraging their patient to utilize the facilities in-house entertainment, or show interest in creating other LEGAL outlets of creativity and entertainment for ALL of the patients in the NH, and if they are such Great Friends, could even be done APPROPRIATELY, off the clock and on their own time, and With the Wife and Families Permission and their Blessings. Honestly is Always the Best Policy!!!
If travel is what is interesting to the patient, they could bring in some Great Travelog type viewing, and make a regularly scheduled "Movie Night", including snacks and make it enjoyable for all to enjoy.
There are Many things that the OP could do to brighten the Patients life both on and off the clock if that is what they desire to do, but they should work within the legal boundaries of their License, and not over step their role in this patients and his families life.
From reading the initial post, all of 3 or 4 paragraphs, a lot of people made some pretty wild assumptions of this PSW's and this patients position there, and Few took in account that they did not have the Legal Authority to carry out such a potentially Criminal Act, let Alone even consider that the patient is likely Show timing in front of this Innocent and caring employee of the Nursing home.
The OP is in NO POSITION to Diagnose the Patient, and has NO Authority to Act or Encourage this poor patient. He/she was Clearly overstepping their boundaries and should have been discouraged from the start, and Gdaughter as a LSW should have discouraged the OP from the start!
One reason this thread incites such emotion is because for most of us that had to place a Loved One in a Facility the journey was long, grueling, very emotional, and in my case the placement was long overdue.
Some of us also dealt with aides that had very shady intentions. I had one coming to my Mom’s home. I also encountered one such individual that was employed by the NH in which my Mom was placed. Mom told the NH aide that she would sell this aide her 3 yr old car for $1500.00. The aide was livid when I told her no that the car was going to have to be sold to pay a debt. She kept insisting Mom told her this and Mom told her that. She was hot! I did throw out that when the car would be for sale the price would be $16,000. She just kept on and on, Mom said $1500.00. Anyway I had to take it to the Director of Nursing.
These are vulnerable adults in Nursing Homes. Most if not all are not responsible for their financial affairs.
Nursing Home Residents with Degenerative Brain Diseases are in Nursing Homes either because of mobility problems, they can’t be handled at home by their Loved Ones. Along with that my Mom needed protection from the outside world. Her disease caused her to make very bad decisions.
As family members that oversee our Loved Ones Care in Nursing Homes we have to put up with a lot of BS. But, had a situation like that described by the OP occurred involving MY MOM heads would have rolled! I would have gone to infinity and beyond to have the aide fired and his/her liscense yanked if they had one.
Family members of Nursing Home Residents should not have to worry about their elders being exploited.
Using my experience as reference that is exactly what the OPs tale sounds like.
This is a very, very emotional topic.
I think its time to shut down the thread. His original post and his responses have been contradicting. Man has a brain desease that kills brain cells but in a later response man has no Dementia. I looked up mans desease. It may be Huntingtons. This is a very debilitating desease. This man needs a professional to care for him. If a PSW worker is like our CNAs they have no medical training. What they learn is from on the job experience. They cannot administer meds unless a medtech. They can't give shots, put in catheters, etc. Their job bathing, toileting, cleaning up messes. Yes, the dirty work.
As a healthcare worker he is being very unprofessional. He is not suppose to get that involved with a resident. Like I said, if he feels there is abuse, he goes thru the chain of command.
I agree with everyone that this is completely inappropriate and crossing major boundaries.
My experience with NHs is most of the residence with dementia are always asking to go home. I have heard the staff saying to them that they are home and move onto another topic. If the person gets agitated I have seen the staff calling a family member for the resident to talk to. Nothing but positive results - so far as I have seen.
There is so much ethically wrong with this. If you are so concerned for this man's well being:
1) Have you talked to his family. Does he have children?
2) Have you talked to the social worker at the facility, charge nurse,, anyone?
3) Knowing his condition is only going to worsen, how will you deal and provide his care when the bomb drops?
4) What steps have you taken to FIND out EXACTLY what his TOTAL medical condition/complete diagnoses is. Not sure you are privy to that info.
5) How will you go about getting educated and fully trained to make this commitment?
6) Are you trying to get on the will?
I am sorry if this is offensive, but it was the first thing that came to mind. I admire you if you are truly looking out for his well being, but you can't just do what you are proposing to do period. You are interfering with a situation that is outside of your job description. It is also obvious you do not know enough about his entire situation to even remotely go along with this, much less do it.
Do the right thing and be his Personal Support Giver at the NH which employs you. If I was in your position and truly cared about this person, I would go to the proper support for him and voice my concerns.
Two suggestions:
1) update resume
2) find a good lawyer
Responsible NH and families will not extend patience for long.
Otherwise this sounds like a movie not real life but maybe his family has concerns about his care and him traveling.
Have you thought about creating a travel business/service suited to fragile seniors and their families. Find medically appropriate trips/ make all the arrangements including advice on emergency services. Start with one facility. If someone had that service I would have used it to take my Mom more places before she passed.
If not a full fledged business, offer your services to travel with families as a caregiver. Just be sure you have an attorney write your contract to minimize your liability.
Please stop considering taking him on a trip and removing him from the NH. Since you work there, you know a NH will not qualify someone who isn't eligible. I appreciate that he may be higher functioning than those around him, but experience demonstrates it won't last. You should be out with people your own age and enjoying YOUR life to the fullest. If he is a true friend, he would not want to burden you and saddle you with his wants and desires. NO ONE wants to live in a NH. My MIL asks me every day to help "get her out."
Consider the legal ramifications you may face if you pursue this. I would definitely pursue legal action against someone if they took the actions you propose.
Turn your kindness and compassion toward other pursuits and enjoy your 20's. Trust me, the decades fly and you'll wake up in your 50's before you know it.
Obviously if he were cognizant he could check himself out, call a cab (Uber, Lyft...) and go where he wants. Since he can't do that he is not competent or someone has declared that he is not competent. If that is the case and he can legally fight that he is competent.
As for you I think you have crossed boundary's that are established for a reason. If you were to take this man for a ride, even to McDonald's for coffee without permission you could be charged with kidnapping and your hopes of maintaining a job in healthcare would be slim to none.
Your caring and dedication are admirable. Even if the man could move out of the nursing home, as his brain disease progresses you'd become exhausted caring for him 24/7.
The man's wish to live elsewhere is valid and he should discuss this with his own attorney and physician before proceeding. Maybe it can work out with you in the picture somehow.
Thankfully he has you as a confidante and ally.
I applaud granddaughter's comments on this matter.
Actually I think this is a troll...
First off, you are in your "Early 20's", so you have Very Little if Any Real Medical Experience, and Very Little Life Experience for that matter! This Man is Disabled, or he would not be Qualified and would Never been admitted into a Nursing Home in the first place, and You have No Right to "lead him on" into believing he could just "waltz off into the distance" with this "Young Thing" who isn't a Medical Professional, Isn't a Family Member, and Most Especially without his Wife's knowlege and Complete Authorization and Approval, Even if it Were a Healthy and Safe Idea in the First Place. Plus, what you are even considering doing with this Gentleman is bordering on Financial Exploitation and Kidnapping, so I would think Twice before putting any more thought behind such Medically Dangerous, Unethical and Immoral "Adventure"!
If I were to ever hear of such Cokamamie Scheme in my workplace or otherwise, I would Immedietely Report You to the Police and to your Supervisor's! You would be putting the Life of this Poor Disabled Man in Serious Jeopardy.
That some of the more Mature and Experienced Caregivers on this site have given you Any Encouragement to proceed on this Dangerous and Childish Plan has Completely BLOWN MY MIND, an I for one am going to Report this Thread to the Agingcare Administrators in request to Shut This Thread Down, as it is so Completely Disturbing to Encourage such a Display of Unsafe Caregiving Practices, on So Many Levels!
Come on People! I pray to God that the thought process of the OP can be written off as innocence and ignorance, if not big heartedness and kindness, But you older, more experienced folks here need to think before encouraging this young persons ideals, and THINK of the REAL HARM that Could come to the Both of Them if this Farce of an "Adventure" ever Truly got of the ground! My God, Think People!
I'm Reporting my own response in hopes that the AC puts a Stop to this Dangerous Thread, this "discussion" should not be encouraged any further!
You provide care for a resident in a nursing home setting. How long has he been your client? Is he your only client? Which shift do you work? How long is your shift? How many others care for him in a 24 hour period? Are you the worker responsible for your client's bathing, shaving, dressing for the day? Can your client toilet by himself to include transfers? Does your client feed himself? Does he eat in the dining room?
I ask these questions because it sounds as if your resident has a big old case of cabin fever! His physical abilities have declined ahead of his mind. He is fantasizing a larger more exciting life! And really, who hasn't had the same thoughts one time or another? A dream trip with a personal aide & no financial worries: the line forms behind me!!!
Seriously, your client needs more stimulation every day! You say he is completely cognizant. He needs to be out of his room & interacting with others as soon as he is up & ready for the day. Even if he is just saying good morning to the housekeeping staff, get him out of his room & interacting with others! He eats in the dining room, he attends activities & even suggests activities that interest him!
Work with the rest of the staff to find jobs he can do: pass around craft supplies, read to another resident who has vision issues, pour juice, pass around snacks, play cards with another lonely guy.
As for experiencing a new location, have the activity director see if his wife is open to getting him a virtual reality device & travel videos.
One of the saddest things about neurodegenerative diseases is the unpredictability of progression. Your client's cognition has remained while his physical abilities have declined. Tonight, tomorrow, next month, his cognitive status may decline incredibly quickly, without warning & without returning.
Put your care & concerns to work right now on quality of life measures for your client that can be implemented in real time & real life. Don't waste his precious cognitive time pursuing a pie in the sky project.
Perhaps there is a troll in the room?
I have never read the word “cognitive” used in this context. I am also unfamiliar with the phrase “full on” in relation to conversation.
From my perspective someone with the behaviors you have described might or might not be “cognitively intact” if that is what you are attempting to refer to, but in the absence of responding to adaptive aids or readily to hands on help regarding ADLs, such a client COULD be quite significantly limited.
You speak of “a rare progressive brain disease that basically kills brain cells”, but Iwhether “rare” or not, most if not all dementias result from some damage to the brain that reduces brain cells, and thus reduces brain functioning.
Bottom line, absent much more information from you, it is very difficult to make any sort of helpful recommendations about what you should decide to do.
If the person responsible for this gentleman’s care disagrees with your thoughts, and is legally responsible for his welfare, I could see your conversations with him being considered questionable.
Unless there is more to the situation than you have chosen to reveal, I would stop where you are, keep the conversations to general topics, and spread your enthusiasm and concern among all of your patients.
I must honestly tell you also, that while I would be glad to discuss my LO’s situation briefly with you, especially if you were a good caregiver, I would still feel compelled to report anything that in my judgment was overstepping of professional boundaries to appropriate supervisory staff.