Background: Wife ill with Schzophrenia for the past 25 yrs. Over this time, she was in a mental ward twice, police called 4 times and nothing I've done to get help works. She won't stay on meds. She hallucinates, has long daily conversations with herself, no friends, no family connections. All 3 of our kids have "fled" from her. She is verbally abusive, irate, unreasonable, and has grandiose hallucinations that she is Queen of England, Jesus etc. Her favorite activity is demoralizing me, accusing me of everything from being gay (I am not) to having affairs with every female she knows including my own daughter etc. She is ultra paranoid-doesn't leave the house, believes neighbor is an alien etc. She relies on me for all basic needs. She has no social interaction other than talking/seeing son a few times a year and her sisters many years ago
In 2022, my son helped get her on meds for a while (she will do things for him, not me). A year ago, I took her to ER for pain; they found a lump in her breast. She refused all treatment- wouldn't even get other tests to see if it was cancer. I couldn't force her even though I tried. I made her do a telehealth call with Oncologist and she hid behind a door during the call.
Fast forward- cancer metastasized to all her bones- Stage 4 . I got her into a hospital for 6 weeks recently and no one there could convince her to get help either. They did what they could and sent her home. Now I am caring for her 24/7 with nurse wound care coming in (Her breast is rotting off) and Hospice care several times a week. She can barely walk now and is in a lot of pain. She refuses to believe she has cancer but knows she is sick and thinks she will get over it. I now have to do everything which is fine except she scolds me for not helping her to the bathroom correctly, straightening her bed right, or picking up a piece of lint on the floor - you name it. I'm constantly attacked, told I am an idiot and at fault for everything. Still- I love her and hate seeing her suffer so I put up with it. I cook all meals, manage her meds, clean up her accidents, help her to bathroom, rub her legs, wash her hair, etc. but still it's never good enough. I do this all alone- no family or friends are helping
When she came home from the hospital her 4 sisters did visit (from Canada). Once back, they began texting me daily and demanding that my wife facetime them everyday. Wife won't answer her phone and says she doesn't want to talk to them. I did force her to talk to them a few times but then she was hysterical afterwards and berated me for hours, told me I am having an affair with them and it was "illegal" to text her sisters. I told the sisters this, even sent recordings of her hysteria and saying she didn't want to talk to them but they still blamed me that they couldn't talk to her. The sisters are also demanding I put her in a facility but I know my wife will be worse off there- she is most stable at home and I care for her better than the hospital did. The sisters then called my oldest daughter (who lives in town) but hasn't seen us for for over 10 years. When I told daughter her mom was in the hospital several months ago, she only conversed by text for a few days and then told me not to contact her anymore...that she would reach out if she wanted more info on her mom. But now, since her aunts called, daughter has decided to take over. Demanded I put mom in a facility and told me I was "cheap" because I didn't. (Money is not the issue) When I said I was skeptical of her concern, she went ballistic, called APS and said I was mentally/physically abusing my wife! APS came twice and unfortunately my schzophrenic wife did not help matters as she is a complainer about everything. The report came back that charges are dropped for physical abuse, dropped for "no proper care" yet on the mental abuse charge it was "inconclusive". What can I do? It is just too much to bear. I am falsely accused
Have you looked into the insurance aspect of in-patient hospice?
There is something called the community spouse (that would be you), and how you separate and keep so much assets so that you will not become impoverished by your wife's medical expenses.
I cannot explain it, but let someone know if you have not done the financial planning for the next step. Or in the search bar, try "community spouse".
I read most of the posts and my heart is just breaking for you!
You are simply and angel on earth. I'm pretty sensitive and usually the one who does all the CG in my extended family--but I would not do as much as you are doing.
Maybe it's not love anymore--who even knows what form love takes? But it is most definitely the most unconditional 'love' of care I think I have read on this site.
I'm sure you will do what is best and right for your wife and your situation. It's amazing how much we will put up with when handed terrible things to deal with.
Shoot, my DH won't even talk to me if he's out of sorts, much less actually CARE for me if I am sick. You, sir are a saint.
I hope, for your own sake, that you receive some counseling of some type starting as soon as possible. Getting ready for the big 'boom' that will come when your wife dies. The anticipatory grief is often much worse than the real thing. Grieving what could have, should have, might have been--and wasn't. And beating yourself up over not being more for your LO.
You can rest assured you have done enough and more than enough. I can only add my prayers to you that this will end soon and as peacefully as possible. I also hope you can mend fences with your kids. Obviously, they were very affected by their mom's mental illnesses. Hopefully you can then move forward and have a life that so long has been out of reach.
((Hugs))
I wanted to post about THC and schizophrenia because it seems many are unaware that any THC is contraindicated in cases of schizophrenia as it can trigger psychosis episodes.
I'd be more behind a benzodiazepine treatment that increases GABA effects and antipsychotics that reduce dopamine for anyone who has this diagnosis. Gabapentin for pain and calming effects and mood stabilizers/anti-convulsion drugs are options, too. There are medicinal options out there that I know about and many I don't know about, I'm sure. But never THC for someone with psychosis issues.
I'm sure the professional medical staff are more knowledgeable about meds than I am, but I know psychosis and THC are a bad mix.
Your wife’s cancer situation at this point will only get worst. As many people here on this forum have advised you, it’s time for you to put your wife in hospice care. Please come back and update us on your situation.
I’m praying that you will have peace and happiness in your life which you deserve.
And this too shall pass. My husband died seven years ago. His death anniversary was December 1st. He died from liver cancer. I don't think that I would have survived emotionally if he would have died at home. We didn't go through any emotional support other than me asking for the hospital chaplin to come in and offer the last rites. He had two days of pallative care in the hospital. He would not have received that level of care at home that he did in the hospital. The staff was wonderful. I knew that he needed a higher level of care. He started coughing up blood that last night at home and died three days later.
Please seek emotional support and spiritual support of your choice. I sought help from my parish after my husband passed, but I wish that I would have sought out emotional support much sooner. Towards the end, we were both tired physically, emotionally and spiritually. Seven years later, and I'm still not fully recovered and have some PTSD lingering. I recently started working after being unemployed for almost three years. I got laid off due to the pandemic. It was a rough and depressing time for me.
Trust that you will survive this. You are tired mentally and physically. Please do not try to carry this burden alone. It is too much to bear alone. You wife is in the hands of a Higher Power. Continue to work along with the social worker and hospice. Hospice provides grief counseling. What you are experiencing right now is anticipatory grief. Try to rest and take time for yourself. Take care of your health and your emotional health.
Some of us have been through the urgent but sustained need to transfer a loved one due to increasing needs, and it is intense. Fraught with requirements of each facility, each provider, so many conditions and rules are only some of the hoops and hurdles in the quest to get the care needed.
The doctor in charge of her care should be contacted, and relied upon for a recommendation, in-pt. hospice. (The same doctor who ordered hospice care).
Maybe that doctor knows someone. Or, maybe the oncologist will know.
Thank you for keeping us informed as to your progress and welfare.
BTW,
Just the fact that you made the call---you are doing so well! Keep trying, as you are able.
Any other small nightstand, dresser, or chair from home should be all that's needed. No need to go out and buy furniture at this moment.
You have found a Hospice facility?
Is the hospice social worker the person assisting you?
If your current hospice provider doesn't have their own facility, it might be worthwhile to find one that does.
The fastest way to get your wife into a NH will as an admit from a hospital. You should discuss this possibility with the hospice SW, as it would involve her going off hospice temporarily.
Going to take a leap here to get you the help you need.
Call APS to make that happen.
Goal:
Place your wife in an in-patient hospice facility, and visit as much as you can.
She is beyond any physical help or emotional help that you can provide now, even with hospice and wound care coming in. You are already burnt out, which is the reason you have not made the best choices for her, or for you. People (professionals) are not going to call you back when you have ignored their recommendations. This is not a DIY situation.
The care you are providing for so long, and her emotional abuse of you is
1) Not sustainable; 2) Can kill you 3) not good for you or her best interests.
One person cannot do what you are continuing to do. Not without great harm.
No good deed goes unpunished, so you can expect that from all of yours/hers family. Do not stay in contact at all. Do not report to them. Work closely with her hospice team.
So sorry, your wife has so little time left. It happens often that the best care you have provided for so long needs to be changed at the last minute. Even when there is no mental illness history. I have observed it happening like that.
If nothing happens by today, make sure a companion sitter comes in to sit with her in her room overnight, so you can get some rest. Ask hospice for a referral.
Please stop over-thinking this very sad and traumatic end of life. It is not giving up to get the professional care she needs as an in-patient.
If you make a decision based only for her.
If you make a decision based only for you.
It would be the same.
What Cwillie and BarbBrooklyn have said is true:
cwillie
Dec 6, 2023
It's not that facilities are THE answer, they are just sometimes the best of many other equally poor options. I know there is no comparison but it wasn't until after I placed my mom (something I vowed to myself I'd never do) that I discovered just how out of my depth I had been. The loving personal care wasn't there but in a whole lot of ways she received better care than I could have provided at home.
As far as other psychiatrists over the years- nope. I tried to get her to see someone numerous times. First time doctor said she needed to see someone (2001?) I dropped her off at psych office. When I came back she was across the street shopping...she never went. When in the mental ward she would see psychiatrist but the minute she got out she would not ever go again.
Your wife doesn’t have any ability to think clearly.
Have you considered that you no longer have the ability to think logically about your wife’s condition? You may be too close to this situation to see things objectively.
I don’t feel that it is productive to speculate on what others think about this situation. Look at the facts and do what is needed for your wife to receive help.
Your wife desperately needs someone to guide her into receiving the best care. Have you contacted any hospice providers?
If you are unable to figure this out on your own, please seek help from others who have experience in this area.
Wishing you peace as you navigate through this extraordinarily difficult time.
How are you doing your wife a favor by keeping her at home to suffer to this degree? Or yourself, to be abused by her to THIS degree and now investigated by APS for bogus charges by a severely mentally ill woman? She needs to be in a facilty where SZ meds WILL be administered along with pain meds to help her. She will be stabilized mentally and physically and kept comfortable until it's her time to pass. Versus you trying and failing to care for her at home all alone. Next thing you know, she'll call the police will a trumped up story of you beating her and then what?
Save yourself and your wife by holding up the white flag of surrender now. Even great "love" has it's limits.
Now, you are at the end of the road. I am glad that you have hospice on board. Do they give you any indication of about how long she is expected to live? If it's very short term, I guess you just have to hold on for a wild ride. If it's more than a few weeks, which I suspect it is, I would hire some in home help to assist you with things and give you someone "normal" to talk with. If your wife has a fit about helpers, which she certainly might, have the helpers do things around the house for your wife. Clean her room. Cook for her. Do her laundry. Do the dishes. Etc. Your wife will likely get used to the caregiver and then you can get out of this toxic and sad environment for a period of time.
As far as her sisters, I'd pretty much ignore them. Or tell them, sorry, she is mentally ill, dying of cancer and does not want to talk to anyone and that you are not going to force her to. If you're OK, tell them they can come visit again.
Hopefully APS will be drop their nonsense.
If you're willing, I second the idea of putting your wife in a facility. I think she is way too much to handle at home. You have carried this load for decades and now she needs more help than one person is able to provide. You have to think of yourself and your health and well being as well. You count too!!
You have told us everything, and if you tell APS just this and give them the names of the doctors where you attempted to have your wife assessed and treated, they can investigate.
Basically any attorney you see is for your comfort and reassurance, as no one can force a mentally ill person to take treatment.
Essentially your wife currently is dying. I don't know if you can get hospice care for her as she may not accept it. She is in the last stages of stage four with breast cancer, and no treatment at this point will save her in any case.
APS will find this out if they continue to investigate.
In our country guardianship is not typically given over a mentally ill person. It isn't the same as dementia. She has a right to make her decisions not to treat under the law.
I would not worry this. Be open to APS. The very WORST that can happen here is that a case is brought by APS to get state guardianship of your wife.
The truth is that this isn't at this point a bad outcome, as she will get end of life care at that point and this will be taken off your hands.
I am so sorry. It is more common than not of schizophrenics to refuse medication, and they often prefer their own hallucinatory world over real life. There would have been little you could do in any of this. Your wife lived longer in your care than most live on the streets, and even in the care of family. My neighbor's son suffered from this disease, even had guardianship after a long fight, from his family, and medications given once weekly by injection. Nevertheless his self medicating led to an early demise in early 50s.
I am so sorry you're going through this. And so sorry for your wife as well.
APS, seems to me no charges were made. They just could not determine if you mentally abuse ur wife. Maybe meaning, they could not tell if wife is telling the truth or not. If the case is closed, they found nothing to bring charges against you.
I too don't know how you have put up with this for so long. Your a good man. Tell her sisters that you are not keeping ur wife from talking to them she chooses not to talk to them. When u force her to call them, you pay for it by her abusing you. You are not forcing her anymore. She is dying, and you are going to allow her to do what she wants when she wants. I would think at this point ur wife is on Morphine for pain and is sleeping alot. Ask the Hospice Nurse if she or anyone can call a sister and explain what your wife is going thru at this point. You do have a right to not answer her sister's calls. You have a right to say when they start accusing you "I do not need this abuse. I am hanging up".
This will not get any easier for either of you, I have walked this 1st hand, so I know of what I speak.
People get stupid when they are scared, just like you are seeing with your family. I recommend asking them to step up if they feel like she is NOT getting the care they THINK you should be providing, make it CLEAR that 1 person can not do this alone. Then tell them that you can not handle them and their accusations if they won't step up and help to pleaserespectthat you are doingthe best you can in a difficultsituation. It would be easy to tell them where to go but, you really need them to be supportive and not provocative at this time. Then if they continue, bl9ck them from any contact.
May The Lord give you and your family strength for this difficult time.
Edit: it is common for breast cancer to metastasize to the brain, so what they think she should be like is not the reality anymore.
I doubt that this woman is able to see anything clearly. Her mental illness isn’t controlled by any means since she doesn’t take her meds.
The combination of fear and mental illness is incredibly hard to deal with. I feel for all of the individuals involved in this tragic situation.
You can let the staff do the "heavy lifting".
((((((Hugs)))))
Caring for someone with cancer is a challenge.
Caring for someone with a mental illness is a challenge.
Mix the two and I don't know how you manage.
If you are successfully managing her meds is it possible to add in the psych meds? That might make it easier for you and more comfortable for her.
I also agree that her needs may be better met in a facility that can manage her pain.
This would also remove you as the proverbial punching bag for her.
Talk to the Hospice Nurse or Social Worker about finding a facility that will meet her needs. (Do know that she will probably be medicated for her safety and comfort as well as the staff. To be in a constant state of anger, fright, pain, anxiety can not be comfortable.)
(I also think an assessment of "mental abuse" on someone that is mentally ill is not ever going to be "confirmed or denied")
In regards to meds I wish I could do that but believe it or not her mind is "sharp" in the sense that she is aware of what she is swallowing. I tried that at first and she refused. Now she is on so much morphine and valium they says if she takes the psych meds too it could stop her breathing
The other difference is that you have really poor emotional support in place. You aren't complaining about the workload care, its other people making your life difficult and stressful. My mantra is "they are idiots, ignore them".
Some people always think facilities are the answer - they would not be the answer for my son. Our family members with mental illness aren't understood at all by the poorly paid, overworked staff members at nursing homes. My son's mental illness and its "quirks" isn't understood by his highly paid oncologist and his cancer center's medical team. Fortunately, thanks to us, my son ended up in the ICU recently when his brain mets were discovered. His dad and brother and I are the only people who know the difference between a real new symptom and the usual psychosis. When I took him to the ER with his brain confusion (that was entirely different from psychosis) I knew better than to tell them he had schizophrenia. Because I didn't tell them they did a brain scan, discovered the brain mets and immediately began treating his brain in the ICU for swelling.
I think you are doing a great job, I am sorry about the accusations, but you know the truth of the matter.
Yet you stay and have put up with her daily mental abuse, which I'm sure wears a person down over time. Do you not believe that you deserve better than this? I only ask because often folks who are abused in any way feel that they in some weird way deserve the treatment they're receiving. I'm here to tell you that you DO NOT deserve the way you've been treated all these years.
I can't help but wonder the real reason you've stayed and put up with her abuse all these years. I find it hard to believe that it's because you love her. And if that is the real reason, you have a very warped sense of what true love is. I'm just saying.
So time to reevaluate your situation and come up with a solution that works best for all involved. And honestly I have to agree with others on here that having your wife placed in the appropriate facility at this point is probably best for all involved. That way she will receive the 24/7 care she requires and you can still spend as much time as you choose with her, but can then go home and get the proper time to rest and just for yourself.
Hospice will still continue her care in a facility, and will keep you updated with any changes in her status.
I wish you the best in making the right decision for all involved, and for you getting peace back in your life.
It's absolutely true that even the best place can't replace the loving, personalized care you give but they can round the clock provide shifts of helping hands and perhaps more important medical expertise on hand to notice and treat problems that will arise. You can still spend every day there with her doing all the little things that bring her comfort, but also be assured she is safe if, for the sake of your own mental or physical health, you need time away - just the ability to go home and have a night of uninterrupted sleep is a huge benefit.