My 81 yr old father is not adjusting to the nursing home we just placed him in. I'm his daughter and just gained guardianship for him. He has end stage kidney disease, diabetes, a severe ulserated leg with his bone exposed (13 inches to date), vein disease, early stage dementia and high blood pressure and he can't walk. He is screaming to go home. He is demanding his cell phone ( his room has no phone). If we give him his cell, he will call 911 or a friend to get him out ( he's done it before). His previous lifestyle involved a 52 yr old woman that had been a so-so care giver and we learned she was stealing money from him. They apparently were in a relationship many yrs ago and last yr he bought her a house and all contents (paid cash). She has 2 teenagers and a drug addict boyfriend who is going to be deported. He has been funding her and her drama for years. We have been estranged from our father ( she played a big part). My father reached out to me 5 months ago thinking he was near death and wanted me to come to him. I flew down and saw what was going on. I hired a lawyer and now as stated earlier..im his guardian. I feel so bad for him...but I feel he's getting the best care now. Am I doing the right thing???
You say:
"I feel so bad for him...but I feel he's getting the best care now. Am I doing the right thing??"
Yes, we all feel bad, regret or what have you when this needs to be done to ensure their safety and well-being.
He's getting the best care, that is what is important, safe and cared for. You question if this is doing the right thing? YES!
You might feel guilty, he might complain and want out, adding to your guilt. Given his many needs and the dementia, what choice do you really have? Please do not let him or anyone else lay the guilt on you. You have done the right thing all around!
Could you or any other family member provide all the care he needs? The ulcerated leg alone he would need special nursing care - mom had that just before we moved her but not as bad as you describe. With all he has going on, you would likely need a nurse around anyway, better that he has many as well as a safe, secure place (would he wander from your home or his?). My brother spent time to remove her bandage, clean it and put on new bandage, and she immediately ripped it off and announced she needed a new one!! Auuugh - I knew it would be hard to care for her and knew I could not do it physically, but that kind of stuff, along with the way she behaves anyway - no way. I'd probably drive off a cliff, if I could find one!! She is not at this time high maintenance, mainly HBP and dementia. Your dad has a lot more going on, which makes it even MORE difficult to try to care for him at your home. He likely would not be happy there either. His home? Does he even have one anymore? Can he care for himself? Would he accept nursing care there or just demand his little tootsie back? No, he's better off where he is, despite what several nay-sayers here have to spout.
You say:
"My 81 yr old father is not adjusting to the nursing home we just placed him in."
Mom just turned 94, and has been in the memory care facility since January - she has not adjusted/accepted, and like they said probably never will. When I am there, sometimes she finds her room easily, other times she asks the staff to show her where it is (we were first in the newly rebuilt place, so I chose the room closest to the lounge and dining area!) As the dementia progresses, "home" will regress back to previous locations. Your dad screams to go home - which home is it, the one he was in when you went to him? Your place? Some other?
It is possible to try several things.
*Medical help to perhaps give him something that will calm him down (I am not a
drug proponent but sometimes a little something to take the edge off, at least for
a while, might help)
*Little white lies, deflection and redirection. I found the little white lies difficult at
first because I detest lying, but it can work and does help sometimes!
Little white lies: tell him you're looking for the phone, found phone but not the charger, report it is dead, broken or lost, need to get another [Under no circumstances get that phone!!] When mom started having the staff call and then hand the phone to her, I suggested they "pretend" to call me (dial an in-house number or the weather number or something), and tell her it went to voicemail and you left a message to call back. THAT should satisfy her immediate need, meanwhile she will forget. Some others suggested telling him he can go home when the doctor says so, when he finished rehab or heals up, when he can prove he can care for himself, etc, something that will take time and may not ever happen, but he doesn't need to know that! Put the onus on someone or something else - it is OUT of your hands! THEY are keeping you here or your inability to manage is hindering when you can get out. These take the onus off of you. They are only little lies... your nose will not grow too much... :-D
Deflection and redirection - changing the subject or changing his focus to something else going on. Hey, let's get some coffee or ice cream! Water your plants! Step outside! Wow look at that sunset, or look how much rain/snow is coming down or wow look how nice it is outside, let's go out or go for a walk! Sometimes I just do not respond to something she says or asks, when it touches on those bad subjects (getting out, going home, etc) - ignore and move on to something else. This does not work for everyone and might not work all the time, but you can get very creative between the "lies" or fibs and changing focus to something or someone else.
One question - does he scream to go home and demand his phone all the time or only during certain times of the day, mainly later afternoon and into evening and night? If he's okay in the morning and most of the afternoon, but starts up later or in the evening, this could be a sign of "Sun-Downing". Although there are common behaviors and they all seem to run in this time period, it seems like most people have their own "thing" they do. Our mom had OCD checking the sidelights, the doorlock, the dishwasher, the living room annnnnnd repeat for an hour to an hour and a half. Some people, so I have read, become nasty to caregivers and family. Perhaps this is your dad's thing? If he does this any time of day, then it probably isn't related. Just a thought.
Again, please do not feel guilty. After being driven away, you responded when he called for your help and you've done the best you can for him! Other than trying to calm him and work around him, I really do not know what else you could do at this point. I'm not sure how long he has been in the place, but given our mother has been there 8+ months and has not accepted it and reading about similar instances for others here on this forum, it may be a while before you get past this. Meanwhile, do not take his anger and rantings (or other negative responses here) to heart. You've done the right things.
Although we were going to install a phone (I did not support the TV as she needed to get OUT of the room and interact) I am GLAD we did not. Initially our mother would have the staff call my younger brother and be all upset, demanding to go home. Being unaware (despite passing on all that I gleaned from researching dementia before it reached a critical point and encouraging him to go look it up when he accused me of being a know-it-all) that this type of behavior is COMMON, he was critical of us putting her there and/or critical of the place. Oh yeah, everything is great, hunky-dory. Not long after getting her in, I decided not to put a phone in and I am glad I did not. As noted in my comment to jchrislove, all too often the residents will make calls to 911 claiming to be kidnapped or what have you... not a good thing. Police have to respond and check on things and that takes services away that might REALLY be needed. She could never remember our numbers, but could get them from the staff if she had a phone. I cannot imagine how many calls I would get every day.... :-O
So, like your sister, she gets them to place the call and they hand the phone over when I answer. Somehow I became the "go-to" person in her mind, not my younger brother, and when they hand the phone over, she has the same litany: I'm here at X hospital, I'm not sick or anything, can you give me a ride home? When I make excuse, and say maybe tomorrow. She'll wonder aloud what's she going to do and I hear them assure her in the background that they have a room for her and that eventually satisfies her. I say I will come later or if it is evening, then tomorrow, too late tonight!
I have suggested to the staff, since they place the call and wait for response before handing the phone over, just PRETEND it went to voice mail (i.e. call ANY number in-house) and then tell her you left a message for me/us to call back. THAT should be enough to satisfy her and in a short while she WILL forget it! I would suggest you try asking them to do that to eliminate or reduce the calls.
At least one call was made sometime after I suggested this method to them, so you may have to reiterate (someone didn't get the memo, new staff, etc). If she were calling to chat, no big deal, but every time it has been she's at the hospital (previous location, not the current one) and needs a ride home.
For your sister (and you): IF mom still manages to get through, do NOT try to explain or argue with her. It is pointless and will not satisfy mom. Be understanding, yes I will come to get you, but make excuse for the current moment - beg off saying I will come later tonight, or say it's too late tonight, tomorrow, anything just to satisfy (the little white lies...) and if she can accept that you will be coming (not), most likely she will forget in the meantime.
Also tell sister NOT to take anything mom says like that to heart. Unless she was always like that, it is not mom talking. If she was like that before, well, learn at least now to brush it off. It is NOT the truth and one should not be made to feel guilty.
If you visit and she pulls this, take some of the other suggestions made in this thread about the 'little white lies'... doctor orders, rehab, recovery, whatever fits her case best. If that is not working, attempt to redirect or excuse yourself to use the ladies room and either leave or hope the staff can change her focus if you stay in the bathroom long enough!
People come here to pose questions looking for advice, support and suggestions, even if the support is just moral support, and that is what WE are here to provide. WE are not here to pass judgement.
As Suzyq62 says, it is not always as simple as take the person into your home and care for them. YOU do not know ALL the issues - what level of care is needed, how able is/are the family members? Does he need EXPERT nursing care? Yes, you can hire those in, but THAT is more expensive in the long term, and if he cannot afford 24/7 care at home, what do they do if a crisis that needs immediate attention arises? What if he was in his own home and they don't show? Cars break down, weather issues delay or prevent people from reaching destinations. He is not just wheelchair or walker bound - he has a lot of critical medical issues!!
My brothers could *probably* physically care for our mother, but one is 10 years younger and still working. You cannot leave a person with dementia alone in a "strange" place without oversight. Older brother has limited patience and I do not see him being able to care for her 24/7. I cannot do it physically, and like some others here, our mother is not the most pleasant person to deal with AND she outweighs me by at least 20# - with my back issues, I could not care for her (never mind that my house is a shambles because of ongoing repairs.) Oftentimes the person also needs "enrichment" and physical activity. Without proper training, many seniors would languish in their own home (mom was self-isolating) or a family members home. Just the basics is not always enough. Physical activity and mental stimulation, as well as being exposed to peers, can make a huge difference.
YOU say "I think your father should be able to die at home if he wants to, and have whatever caregiver he wants." If you READ Sandsue's post PROPERLY, HE called Sandsue and wanted her to come, thinking he was near death. The "care-giver" was taking advantage of him - THAT is wrong and should stop, no matter if he "wants" her, but NOWHERE does it say he wants her back NOR does he say he wants to go home to die!!! For people with dementia, "home" could be the last place they lived, the first, or any other between. Our mom seems to be on the brink of forgetting that last place... will be interesting to see which previous residence is "home". You seem to be inventing scenarios.
YOU say "Also you have been out of his life for a very long time and have no right to control it." Again, if you READ the post, the "CARE-GIVER" drove them apart. It is not like the family abandoned him. It also is NOT like they are trying to "control" him, they are trying to PROTECT him and provide the best care for him. JeeZ Louise!!
YOU surmise that their "ultimate goal is to inherit as much money as possible."
...and you would be WRONG. If he is in a nursing home, his income and if needed (which is likely) his assets will be PAYING for that. AL/Memory Care and Nursing homes are NOT cheap!! Most SS and pension income will NOT cover the cost of a nursing home. If he has ANY assets, money and/or home, THAT pays the balance. Depending on how long he lives, there might be nothing left (especially after buying that fancy pants a home and furnishings! But apparently that spending is okay, because in YOUR opinion it is HIS money and he can spend it how HE wants to - OMG!) We, with mom's okay (she prompted it, I just enabled it) years ago set up a trust for their money and home before dad passed. When she started down the yellow brick road, we redid the trust to protect her from herself. NOT control, PROTECT. I took over her bills and manage them, but do NOT take anything for myself. HER assets are to be used for HER BENEFIT. By doing a trust, no one else can take advantage of her. If anything is left (IF IF IF) after she passes, then we three inherit, but she could actually outlive it all (94, only dementia and HBP). Another poster here (see below) also insists that we who do this TRUST ETC are just trying to steal the money. EXXXXXXCUUUUUSE ME! Nothing could be further from the truth. Do some people do this? Yes. The majority? No. Even if they are doing this, it is NONE OF YOUR BUSINESS. The remaining family and/or friends should look out for you, not some pooh-pooher on a web forum.
YOU say "He should be at home with end of life care, if that is what he wishes." and "He should be able to die the way he wants, and spend his money how he chooses."
First, nothing in the poster's question indicates he wants to go home to die, nothing. Given his various ailments and his inability to properly manage his finances, he NEEDS specialized care AND someone to watch over his affairs (assets). Can any of the family members provide that? I would say no to the physical care or the poster would perhaps wonder if that is best. Just given the ulcerated leg... our mom managed to injure her leg (SHE has no idea what she did, AND had no sense to call anyone about it) just prior to us moving her to memory care (against her wishes). It was Cellulitis, probably very similar, and it WOULD KILL her if not treated. If we had not been there when we were to move her, she would most likely be dead already. Is THAT what she would want? Hell no. Is THAT better, in YOUR little world, she would get to die at home??? She also periodically asks to go "home", but since dementia typically takes short term memory first, she has not adjusted to the facility being her home, nor will she. We also did not end up giving mom a phone, for the same reasons (NOT control - my daughter works dispatch - do you know how many seniors with dementia call 911 for help, claiming they have been kidnapped? Unfortunately the police MUST respond, taking them out of service while they do the check, meaning they are not available where they might REALLY be needed!)
YOUR comments about nursing homes - they are NOT all created equal and with more oversight than years ago, most are not all that bad, especially if you the family stays involved and can monitor things. We went with memory care, private pay for now. When she reaches a point that she doesn't know any of us, cannot manage herself (ADLs), cannot walk, goes blind, etc, then we may have to either bring in nursing care or choose a nursing home because she would need extensive care. She did say before that she does not want extraordinary measures (no feeding tube, etc), but it can still take time and she would need bedside care at the least.
YOU say: "Someday, how would you feel if your own child shoves you in a nursing home?"
Is that what our parents, or eventually WE would want? Not likely, however if it is what is best for the person, that is the route we must go. The private memory care where our mom is does not provide skilled nursing, so we either have to bring it in, or ship her out. By that time she will be merely a shell, needing some skilled nursing care. If you DISCUSS this with family while you are still able, YOU have to make your wishes known. Personally, if I am but a breathing vegetable, what do I care where you put me? It is just a matter of time by then. My kids are aware of what we had to do with Nana, and hopefully smart enough to check out places for the initial stages, like we did, if I am so unfortunate as to follow her down the yellow brick road.
YOU say "All the people who put their own wishes for institutionalizing everyone above the individuals personal rights are control freaks."
My response to that is YOU are the control freak - if you are not there to see all that went into the decision, you have NO RIGHT to judge anyone else (actually, even if you were privy, you still have NO RIGHT TO JUDGE OTHERS). As I stated above, one brother is working and cannot provide the level of care she needs (we tried to leave her in home and bring in aides, planning to increase the 1 hour check 3 times per week and care level as needed. SHE kicked them out after a few months and refused to let them in, so that would not work for him either). The other brother is out of state (1-2 day drive) and I do not see him having the patience much less the expertise to care for her, especially as the dementia progresses. I told them this, but said hey, you want to go that route, knock yourself out, I will not object - just be fully aware of what you are getting into. I knew I could not manage it. I am NOT a control freak, nor is this poster. Despite how mean and rude she treated me over the years, I still had concern about letting her stay ALONE. WE took the car away before she could accidentally kill herself or someone else. WE found a way to get her to move (still not willingly), out of concern for her well-being, NOT because we want to control her. BTW, are you also someone who would JUDGE us if we had chosen to leave her where she was and she died a painful miserable death a few weeks later from the Cellulitis????? We are far enough away that daily checks were not possible and she refused the aides, so it could have been another week or two before we found her. It was already bad enough over a few days, so at 93 it likely would have killed her. How would the judicial system look at that? Elder abuse/neglect? And you? How would you judge us????
Final thought - if a person is asking for advice or suggestions here, then provide some useful guidance or moral support. Take your high and mighty judgments elsewhere. Although we were raised with religion (not strict but we had to go) I am not a religious person per se, HOWEVER, I do recall this:
"Judge not, that ye be not judged. For with what judgment ye judge, ye shall be judged: and with what measure ye mete, it shall be measured to you."
Also, if you haven't read Suzyq62's response, DO IT. She basically backs up a lot of what I have said here, but THIS comment is directed to YOU, not the poster (and to others - if the shoe fits, have at it!)
(somehow I feel you are related to or know Dontask4handout - two peas in a pod!)
Maybe also talk to an elder law attorney?
I had the same issues when my mother was placed in the nursing home. She asked when she was going home and I told her that question was for the doctor and orders to leave must be approved by him. I always took myself out of those awkward moments by deferring to doctors, nurses, etc. I would tell her that they have the credentials to know if she's safe at home. Do not get a phone for him as he might phone you all the time and others. Wishing you all the best.
If he wants his cell phone, here's what I would do:
He wants his cell phone? OK, but first turn it off and have it disabled. Then, you can also start removing all of his contacts and even pull the battery if needed. He wants his cell phone? OK, but not until it's disabled with no context and without the battery 😂
We have tried to get home health workers to stay with her, but something always seems to happen like personal emergency, or care givers just quit. Not to mention the cost. It became impossible to manage all that from out of state. Her 3 sisters, who live within 5 minutes of her did not want the job either after we offered to pay them. My sister and I have been passing mom back in forth for the past 5 years, because she isn't the easiest person to deal with, never has been. Having gone completely blind during that time has been very hard to deal with too. I have cancelled her cell phone, because she can no longer operate it and I have been paying that bill for 10 years.
Last night my sister called me and said the nursing home called her because mom was demanding to talk to her. They put mom on the phone and she demanded my sister come and get her. Because she did not know why she was there to begin with. My sister tried to explain to mom that she has been taken to ER 3 times in 30 days. The last time being 2 days ago for a fall. She's had strokes, low oxygen levels, some paralysis on left side, difficulty swallowing, dementia, and is also in diapers not able to walk to bathroom. She told her she's in rehab to get better. Mom called my sister a liar and said she just didn't want to deal with her. My sister felt horrible.
Bottom line is, for whatever reasons, we cannot always be there for our elderly parents no matter how much we want too. It's not always simple to let them stay in their homes. I wish it were and we tried twice and both times we had to rush up there and get her and bring her back to our homes.
It's so important for our parents to plan for their future, but that doesn't always happen either. We tried to talk to mom about planning ahead as she had glaucoma and would, if she lived long enough go blind. Wills, DNR,POAs were to morbid for mom to talk about.
The 24/7 care needed to insure they are safe and as healthy as they can be is beyond what family can do sometimes. It's sad but a fact. I think your hearts in the right place and your doing the right thing, but maybe, if he has the means and it's possible, as he nears the end, letting him go home to spend his final days his way. You can walk away knowing you did your best. I don't know all the logistics of your situation, but it sounds like he has the money to do this. I would love to have mom go to her home to live out her days, but now we're having to sell her home to pay for decent care.
Good luck to you and God bless you.