Please read this post if you would like more background.
https://www.agingcare.com/questions/caring-for-a-schizophrenic-wife-with-stage-4-cancer-484616.htm
Short story: Caring for abusive schizophrenic wife with stage 4 breast cancer who refused treatment and has maybe a month to live. Trying to get her into a facility.
Things have gone from bad to worse. After 4.5 months of caring for my wife alone and I do mean it is ONLY ME (and hospice for 2 hrs, 3x a week), I finally called the hospice team and asked for help getting her into a skilled nursing facility. They were very helpful at first. They gave me a list of places and I had a friend help me research, make calls, etc. I picked out 2 that were great- nice places at $15k per month.
I knew my wife would not go willingly and I told the facility this. They understood and said that is common with mental illness and it was ok... they would still take her. They suggested non emergency transport and having the nurses there when she goes to give her some heavy sedatives to make the transition easier. I had it set up for a Monday and then on Friday at the end of the day her hospice nurse called & told me I could NOT force her into a facility even though I have medical power of attorney. The nurse said she and the social worker would need to have a "care conference" with my wife to get her agreement before I could admit her! So I had to call the facility and put that on hold.
Nurse came at 2pm on Monday (instead of 12 like she said). Then she simply does the regular nursing care & says the care conference will be tomorrow. So they come Tues and try talking to my wife. I kid you not that it was 40 minutes of my SZ wife telling them (before they even mentioned a facility) that she knew they were there to "break up her marriage" and force me to divorce her?! We all assured her that was not the case. Every time we tried to bring up the fact that her sole caregiver (me) was getting burned out and needed help she would say things like- "he's never leaving me and he's agreed to sleep in bed with me again." Then she would go on and on about how I was "hers" and they were there to break us up. She even thought the social worker was an attorney.
I have not been sleeping with her for 20 years because she kicked me out years ago and now suddenly I must sleep with her even though she insists the lights stay on. So because of this, I won't sleep there every night. This "conference" became her platform to tell the team that we are lovers and that I still want her, basically talking about our (past) sex life and that they can't mess that up by moving her anywhere. FINALLY they get her to talk about respite care and how I need that and she flips out, "No way, no how, never is she leaving the house!" She screams. We all agree, "Ok ok, we understand," just to calm her down. Then the nurse gives her a "test" for mental illness/schizophrenia (like they haven't seen enough already??) even though we have a diagnosis from Sept 2023 (and previous yrs).
Here comes the punch line: "Your wife scored a 17 so she is capable of making her own decisions. You can't force her in a facility." Are you kidding me? Hospice BLOCKED me from putting her in a facility! At this point my wife cannot walk, is in excruciating pain (bone mets), wears diapers, and her pain management is more than I can handle. She rings a bell we have set up every 5 min for me to come running "just sit with her" vacuum, ask me a question or whatever mundane thing she wants just so she can keep me in her sight at all times. I also work from home. If I don't do what she wants, she moans and cries and tells me I am a no good loser who is sleeping around. Then she calls her sisters telling them she feels she is in danger, he's mean to me, he doesn't love me, etc.
Please, please anyone tell me how can I get her into a facility? Is it legal for hospice to halt my ability to do this?
It’s absolutely despicable that hospice has blocked you from getting your wife placed in a facility.
How on earth does this hospice provider feel justified in making this decision? It’s insane!
I think after the shock wore off, I would be mad as hell about their decision to allow your wife to have a say in this matter when clearly she isn’t capable to know what is best for her or you.
Fortunately, we had an excellent hospice nurse for my mom. Mom had Parkinson’s disease and dementia.
Mom had a great relationship with her nurse and this nurse truly cared about my mother’s best interests and our family. Mom was in my home for over a decade. She was also with my brother and sister in law for over a year.
Anyway, mom’s hospice nurse was moving to a different hospice provider. She gave us the name of the organization so we could sign up with the new provider. Mom’s nurse worked to get mom placed in an end of life hospice care home.
Mom received excellent care and was kept comfortable. She died peacefully in the hospice care home.
The entire purpose of hospice is comfort care. Have you considered switching to another provider? You aren’t obligated to stay with the same provider.
Why don’t you ask the facility where you want to place your wife if they can help in finding a hospice provider that will understand your situation?
I hope that you can resolve this soon. I am so very sorry that you are going through this nightmare. Please let us know what happens. We care.
I will say her main nurse is very sweet and she is a GOOD nurse who cares well for my wife. But she is over her skiis on this. She has NO CLUE or understanding about mental illness. Also my wife has multiple personalities and is extremely manipulative. Even though she is bat $hit crazy she still can put on a show when needed. She also throws me under the bus constantly if she is not getting her way (ie: me sleeping in bed with her and doting on her every minute). How she passed the test (which again was just a 10 min story where she had to repeat facts) is beyond me.
Another factor has come into play is her sisters (4 of them) from Canada. Hospice was told by my wife in the beginning not give them any info. Wife now has "made up" with the sisters and one called while the nurse was there a few days ago. The nurse proceeded to speak at length with the sister. The nurse is now speaking more with the sister than me because this sister is very forceful and wants to control everything. The good news (I guess) is 2 of the sisters are coming down (just found this out today) so I will finally get a break. I am leaving for the full 2 weeks they are here. Maybe when they see the difficulty and the insanity they will realize what I have been through.
Gone are the old days where people were threathened to be (or indeed) collected by men in white coats & taken against their will into facilities. Although your current situation is very hard, consent is a massive step forward for human rights in general.
Your Wife was deemed able to decide for herself where she resides over a 40min interview with Nurses. She wants to remain at home. She did not give consent to be transfered. THIS is why Hospice staff had to stop the planned transfer. No consent.
Does that make sense to you?
You may need someone better educated in law to explian it better that I can.. but this is how I see it;
YOU have rights too.
No-one can enslave you.
No-one can insist what care you provide.
No-one can decide for you, how much is acceptable or too much for you.
* I am not advising you to do this * this is hyperthetical - but when someone tells the Doctor, Nurses or Hospice staff they are done, burnt out, need a break, have arranged a holiday out of town for 2 weeks - what then?
When someone needs round the clock care, this needs to be in place at home or they must be transfered into respite residential care.
No Doctor will spend 40 mins discussing this with a patient. It takes 5 minutes.
Doctor to patient: You need round the clock care. Your Spouse/Main Caregiver is taking a break, he/she won't be able to provide your care, therefore you will need OTHER care. Either 24/7 help at home or residentual respite care.
Does that make sense to you?
Please don't stay at this level of high stress. Call YOUR Doctor to discuss your needs.
The wife is delusional and somehow convinced the nurse with her lies. This situation is truly tragic.
I get the whole consent thing but only when a person is capable of deciding what is best. Clearly, this woman isn’t capable.
The husband isn’t just thinking of himself knowing that this job is too big for him to handle. He is also trying to place his wife in a facility where she can get professional care 24/7 and die peacefully.
You can engage an elder law attorney to determine if you are within your rights to admit wife to NH permanently.
You could also simply hire a live-in caregiver from an agency. And take some respite time away from this deteriorating situation.
In home health care??? LMAO. Yeah, try that with someone with SZ. I DID try that. First the persons who came in sat on their a** and watched TV while my wife rang the bell over and over, and would only let ME take her to the bathroom, help her etc. Also they cannot administer meds which she now gets at least every 2 hours so tell me again how I get a break other than leaving the house for 2 hours at most. I am in a rock and a hard place and I simply cannot believe the incompetency and roadblocks in healthcare. Sorry for the vent....I'm about to have a nervous breakdown
The law is blocking this, because THAT IS the law.
Having a mental illness is not like having a dementia.
Your wife is competent under the law to make her own decisions.
You say that your wife has a month to live.
Basically you are down to staying or going.
That's the choice.
If you go you need to let APS know that she is a person at risk.
She will be hospitalized, and from there into care soon enough if you stay away from home.
I don't know another choice.
15K will go a long way to get you nearby housing.
Discuss with Hospice.
Perhaps see an elder law attorney for advice.
But yes, you are up against to the rules under the law, and you just described them perfectly. As one judge said in a case I remember "It isn't against the law to be crazy; we don't take a citizen's right from him for being crazy as long as he isn't harming anyone else".
Her sisters who live in Canada visited once early on and then called APS on ME because my wife later refused to talk to them on the phone. Sisters told APS I was physically and mentally abusing her when I have gone above and beyond to care for her. I wash her hair, wipe her a**, change her diapers, make her 3 meals a day and come running every time the bell rings. Of course, APS charges were dropped but STILL...who in their right mind makes things worse on a dying person and their caregiver.
This country is f'd up if they think a severely mentally ill person can make sane choices. My wife still says she does not have cancer even though she has festering rotten flesh all over her breast. She also still thinks she had "an unfortunate accident" but she will get better. And I am the crazy one? I am doing my best and want her in a skilled nursing facility. This is beyond what one person can handle alone
If your wife already has a formal diagnosis from last year for schizophrenia, could you take her off hospice and then arrange her admission to the facility directly with them? She could still go back on hospice once there.
I get what everyone is saying about consent, but it doesn’t sound like your wife is capable of consent. You may have to get this particular hospice provider out of the picture. They don’t sound like they’re providing much help anyway.
Another thought..my mom is also bedridden and rings for someone to do things for her constantly. I have hired help. You said you work. The way I convinced mom to allow hired help was by telling her I couldn’t care for her while working. My job cannot be done remotely, but still, how can you work when someone is calling you every 2 minutes?
Let us know how it goes.
Or to quit hospice and call 911 and have wife admitted to the hospital and refuse to take her home.
If the hospital attempts to send her home in a cab, vacate the house.
I agree about the firing. I will do that. Hospital won't get her if she refuses to go
Medicare, Medicaid will pay for Respite Care.
They will place her in a facility that will meet her care level for about 5 days. this would be covered by Medicare, Medicaid and other insurance.
At the end of the Respite stay you can then say that you can not care for her at home in a safe manner and that she needs to remain for a "while".
Please read this whole string. They won't take her out of the home against her will.
If you can take it slower, take your time to plan, read on if you want.
You have come a long way together.
You have chosen to stay with your wife, through Sz, Ca & now end stage Ca. This must be so very hard.
People with mental illness can fluctuate as you know - capability for concent will fluctuate too.
When someone is delusional or with active psychosis (such as you described previously) capability for decision making is impaired. However, once stable, decision making may be restored.
Rights are usually withheld temporaily (such as Baker Act) unless proven they need to be extended. If longterm, then Guardianship/Conservatorship discussed. Deemed unable to make decisions may not be ALL decisions either. It may be accross only specific decision making areas.
Decidng DNR or invasive medical treatment for ONESELF can still be preserved despite not knowing the months if the year backwards.
Your Wife *on the day* of that assessment was deemed capable of deciding for herself.
As I said before, this should not mean she can decide matters for YOU.
When you described the previous experience of in-home sitters - when your Wife insisted on ONLY YOU to help her in the bathroom. What happened?
You stayed.
Ask yourself: Who MADE you stay?
Sorry that this is harsh. But until you let go a bit, are able to trust the staff to take over, decide you can leave for short times, you will stay right there for 24/7.
You are the one to give yourself permission to leave the house for longer that 2 hours IF YOU WANT TO.
Maybe you don't want to. That's OK.
But you CAN employ EXTRA HELP to help YOU.
Delegate what tasks you choose to. Then sit in another room, go outside or go out.
People can sound panicky when they feel powerless. You DO have power here.
1. I would change hospice agency. I'm thinking their priorities is that the money from Medicare will be going away. The place where your wife is going, see which hospice agencies they work with. Do the research. Change to one of them.
2. I would pitch the change of environment to your wife as "she is going to a spa" (or both of you are going on vacation)
3. Would the new facility allow you to temporarily (a week or 2) allow you to move in with her and then you can exit? If she demands that you sleep together, maybe you can move two beds next to each other.
4. Geriatric psychiatrist recommendation?
What does the new facility suggest? I'm sure they have encountered this situation before unless they are newly opened.
Best wishes!
1. I do plan on changing the hospice team. They have been so unhelpful. We had a weekend nurse come in today. My wife has pressure sores on her butt and the pain is radiating down her leg and more pressure wounds are developing. The nurse today taught me how to reposition her so that the wound won't cause the nerve pain down her leg (her biggest complaint) and she also said there is a special share that hospice will provide that helps with this as well as getting her up and down.
Geez that would have been NICE to know a month ago?!!! Our main nurse, who is the one who is saying my wife is able to make decisions, NEVER told me any of this. I am so pissed.
2. I've tried pitching it as a spa, nice apartment with lots of TLC, activities, work out room (yeah she thinks if she gets on a stair stepper she will be healed) but she sees right through it. Change is terribly difficult for her. The last 10 years she has been completely at home. I do all grocery shopping etc. The only outings she has had are on the back patio, to our sons home a couple of times a year and if I run her up to walgreens (and have to go in with her).
3. I can ask the facility this. Maybe that would help with transition. I'd be willing to do that after my respite
4. Sorry but I have to LOL on this one. My wife has refused all medical treatment (even virtual teledoc calls) forever. She will not willingly see a doctor so unless she is in a facility where they come to her, that is not happening.
I
Call 911, and have her transported to the hospital immediately. Tell them she cannot come home and needs to go to a skilled nursing facility. She can have hospice care there or not -- they should be able to handle her needs without it.
Contact her doctors that know she has SZ and get it in writing that she cannot handle her affairs. The people at the SNF don't get to make that call.
Do all of this NOW.
Her sisters are coming now finally (they said they were coming in Nov and it is now Jan) They have done nothing but cause me trouble. They have been dictating from Canada what I will/will not do, when I will do it and how I will do it-- when they have no clue how American Healthcare works. They think I just make a call and put her in a facility and because I didn't do that quick enough and because my wife wouldn't take their phone calls (which was somehow my fault), they called APS on me. When I am finally ready to get her in, I am now blocked.
Honestly at this point I am so burnt out, I don't care if the sisters want to handle it all. They will find out the hard way the hurdles they will face. I will leave to go see my daughter the minute they get here and I will not be coming back for 13 days. I am getting respite despite the incompetent hospice team.
A social worker will be sent to speak to you and that is when you tell them that you cannot and will not take care of her anymore at home. Tell them about her mental illness and all other conditions too. Then let them know what the hospice agency you're using is pulling. That they say she is competent to make her own decisions. Tell them that if they release her back home that it is an unsafe discharge because you will not be there. They will place her in care.
Then you call your sisters-in-law and tell them what's going on. Try to explain to them that this was the only way to get your wife the care and pain management she needs.
I'm so sorry for your situation.
This may be absolutely useless to you, but I’m passing it on anyway. The best advice I ever heard came from my mom’s attorney. It sounded ridiculous and insulting at the same time…probably because of a recent “incident” with my dad: She was told, “ You will know when you’ve had enough.”
Before you get as insulted as I felt :( please consider: that brilliant attorney empowered her ( my mom), by letting her know she was choosing to stay. Cut right through all the reasons and inconveniences and kids and dad can’t cook/appointments/have to’s plus the latest crisis… to she was “deciding to stay”. **Which meant** she could choose to leave when she decides. Eventually a thing happened and she’d had enough. She left with some clothes and her work bag, found a room to rent in a woman’s house, kept her RN day work and picked up a night job, and then completed the legal and financial details - the house, kids, china, furniture - **after** she saved herself.
I would not make it in your shoes for two days - I’d be out to preserve myself…check my own self into a retreat and call 911, APS, family to report a vulnerable and mentally unstable senior/adult, alone. My explanation (not that a lengthy one is needed) is that I feel this person cannot care for herself, and I am **unable** to do it due to my own health emergency. What happens after is on them. (I’m already not there.) If they decide she can take care of herself, I might decide to call again after a few days. If the siblings come, fine, but i would absolutely not wait for permission to leave, and I would not answer calls from her except through my attorney, and I would not return. I’m so sorry, because that’s harsh and easy to say.
(The original post compelled me to make an account on this forum - I visit often to read in hopes of helping our parents.)
I do not take offense at all. I am so sorry for the abuse you and your mother experienced. It takes it's toll and over the years those who are abused develop learned coping behaviors that are hard to break. I know this...yet I still stayed. Mostly because I know she is sick (even before the cancer she could not function normally) and can't take care of herself.
I am an older gentleman (62) and I was brought up to do what is necessary and right, to protect those in my family and to grit it out when things get tough. Also, there is still the stigma that only women are abused by men...not the other way around. Unfortunately that simply is not true
I am getting a break when the sisters come Monday. Thank God. I am sure I will come back to a mess and who knows what accusations they will have against me because when my wife finds out I am gone (I am not telling her I am going) she is going to go ballistic and will most likely falsely accuse me of all kinds of nonsense. I am so over it...if others can't see the insanity over the years, look at the diagnosis and the police reports and realize she is nuts then I'd say they are all insane
https://www.nami.org/Home
Not only do they have support groups but they also have a chat line and a crisis line. Hopefully they can advise you and direct you. Unfortunately it is a weekend and so I don't know how much support you can get.
NAMI HelpLine is available M-F 10 am – 10 pm, ET. Connect by phone 800-950-6264 or text "Helpline" to 62640, or chat.
, ET. Connect by phone 800-950-6264 or text "Helpline" to 62640, or chat.
In a crisis, call or text 988.*
My apologies for my comment. I am sure there are many good CNAs and thank you for the work you did. Unfortunately the 2 that came to help us were definitely not great. Because of the experience and because my wife gets mad if they come in, I am reluctant to call them again.
Luckily I am getting respite despite hospice. I am not thrilled about it being the meddling sisters but at this point, that is all the help I can get and I am physically and mentally exhausted from the 24/7 care and abuse
It’s really sweet of you to apologize to Burnt and acknowledge that there are wonderful caregivers who work really hard. Just like in any other profession though, there will be bad ones too.
When I am back from respite if things are much worse, I may try this but I am not hopeful they will take her
"hospice blocked me"
"I've given up on the system"
"I am not hopeful they will.."
Check in with yourself, that you are not in 'learned hopeless' mode due to the past events.
Hospice needed consent, were looking after their patient as they needed to. Keep the discussion OPEN - with Hospice nurses, Primary Doctor (& 911 if need be).
Keep pushing for the best outcome for both of you.
Take the lead as best you can.
Sending thoughts of strength your way.
https://www.google.com/search?q=emergency+guardianship+in+minnesota&oq=emergency+guardianship+in+minni&gs_lcrp=EgZjaHJvbWUqCQgBECEYChigATIGCAAQRRg5MgkIARAhGAoYoAEyCQgCECEYChigATIHCAMQIRifBdIBCTEyMTYyajBqN6gCALACAA&client=ms-android-verizon&sourceid=chrome-mobile&ie=UTF-8
With that, I personally would turn her over to her sisters and file for legal separation while I was gone. But, that's me and only you can know how much you can take.
Either way, I suggest you consult with an attorney to see what actions can be taken against hospice.
Hey, FWIW, you might be able to use the pressure sores as leverage to get an ER admit by saying you're worried they are going septic. Just a thought...
May you finally get peace someday soon.
I won't repeat any of the great advice below, but your wife's stated refusal to go to a facility reminds me of an instance from my time in the military. One of my guys had a terminal brain tumor. His wife was a tiny foreign national.
She managed the best she could to take care of him. I did what I could from the military side and give her all the support I could. A new hospice program opened at the local VA, but he refused to go. His wife struggled, much like you.
We had to wait until he was no longer capable of refusing to move him to hospice. I just wanted to point this out that once your wife isn't capable of refusing, at least at that point she can be moved. This may not help you much but at least it's possible.
This information sounds heartless, but caregivers desperately need help too. Best wishes to you.
Your responses to us show you to be so very responsible and responsive, but also show that you are endangered yourself at this point, and I am worried for you. You could have a heart attack behind all this in a second.
You have said how unfair the laws are but you seem to understand that this IS the law now, and not the fault of Hospice who is trying to help. They used to have facilities to take people in. They don't anymore and are now a part of the military industrial complex, bought up by hedgefunds, supplying the minimal for enormous payouts from medicare (minimal being 2-3 bedbaths, one RN visit weekly, a call from clergy, a call from social worker, a bottle of morphine).
Because you wife is competent you cannot place here.
As she is helpless and dying you cannot legally abandon her if you have accepted next of kin and POA over her and no one can replace you.
I will tell you what you CAN DO. You can have a physical or mental (or BOTH) breakdown and call APS and tell them you are going to a motel with chest pain and they better get over there right away because she's helpless.
You can go to an ER.
That is I am telling you to LIE.
To tell you the honest truth, this is the system. You are angry about the system. I don't blame you for a single second, because it is a killer. So you will have to manipulate it the best way you can. As far as I can see it's about the only chance you have for real help.
When I was an RN men came in all the time, and women as well, having collapsed with chest pain doing caregiving. Their cared for one came in and was hospitalized as well, and from there social workers took it over.
You say she will die in a month. I must tell you that there's no guarantee on THAT one if she is still eating and or drinking.
I am so sorry. I feel your frustration to my core. I am so sorry and hope you will continue to update us.
I will be out of here tomorrow for 2 weeks. Thank you God
When all of this is over, I hope that you will take all the time that you need to heal.
I can’t imagine how it would feel being married to someone who is mentally ill.
Mental illness is a very complex topic. We want the stigmatization to go away, yet we shouldn’t ever forget how difficult it is for the people who live with them.
It’s so easy for others to tell you what they would do but I don’t think anyone really knows how hard this is until they have experienced it for themselves.
I am sure that living in this situation day after day after day has taken a huge toll on you.
I suppose when your wife dies, you will feel tremendous relief. Any grief that you feel will most likely be mourning for what you wish you would have had in your marriage, instead of grieving for the loss of your wife.
Wishing you peace now and after this tragic situation ends.
You are correct- she cannot take any psych meds with all the other meds she is getting.
Does anyone know how to file for emergency guardianship? Would I need her in the hospital or a doctor's evaluation to do this?
I married her when she already kids. I traveled a great deal for many years and I don't know what happened when I was gone. When I was around, I stopped the verbal abuse as much as I could. As far as I know she never physically abused the kids. We had one daughter together and I was successful in removing that daughter from the home. She went to live with my mom and has never once talked to her mom again. That is who I will stay with during my respite.
Our son was not really abused by her. For some reason he is the favorite and based on her family of origin, the brother of the family was a prince so she treated her son the same way. Pretty sure she was sexually abused so for at least 2/3 of our marriage she accused me of screwing everyone- including our daughter, neighbors, even men and I am not gay. Her abuse with me was mostly mental.
Should I have left? You bet. Why didn't I? I can't really answer that other than I felt threatened by her comments of "turning me in" for sexual abuse (which of course wasn't true but women have the upper hand in these situations) and the other reason I didn't leave is she most definitely would have been on the streets. She has not had one "friend", not a one, since the late 90s. She shunned all of her family and mine until recently letting the sisters back in.
Yesterday I was a wreck so some of my comments such as "raging lunatic" may not describe her now on her death bed. You are correct, she has little energy. But what she does still have is the ability to manipulate and convince others of whatever needed. And though she may not yell as loud or be able to physically fight, I guarantee you she will "fight"
Your name is BurntCaregiver....I am beyond burnt. For you to tell me to gut it out another 2 weeks or months tells me you really don't understand being at the end of your rope. I cannot do this anymore and thank God, her sisters are coming. I don't even care that they will all throw me under the bus. The facts, past history, recordings, police reports and evidence of the care I have provided speak for themselves.
@everyone Thank you for all for helping me....this site has really given me a lot to think about and some real steps I can try when I am back.
They may be at the sidelines.. may SEE your Wife is driving & SEE you already under the bus. They may have decided to ADVOCATE by involving APS to get you out from under it.
Speak up to Hospice staff, your Doctor, your Wife's family.
Ropes to help you can be swung your way. You have to grab them.
Whether you do that from where you are, now, or from a distance where you may have the support of your daughter, is up to you.
I hope the sisters show up so you can run for the hills!! When are they scheduled to arrive?
You mention wife being in more and more pain - hospice is supposed to manage this pain, aren't they?? IMHO, she should be medicated enough to not be suffering! No one should suffer, especially at the end of their life.
Can't she take anything to calm her the heck down? My experience with schizophrenia is zero so maybe that's stupid but it just seems like she's being crazy and that is making you crazy. I seriously don't know how you dealt with this for all this time. You deserve a better life. And you are still YOUNG so you will get your chance for a new life where you come first.