How to build him up when he wants to tear me down.

Hello. First off you are an amazing person. Believe when I say this that is only going to get worse. I think you have a loving attitude..But make sure you keep others close. Friends? I am sure you have many. Talk with someone as some will start name calling and sometimes are threatening. I will listen anytime you need it. My spouse is showing more aggressive and anxious behavior. He says things that hurt..but I know it is his Parkinsons. My brother has Parkinsons and has LBD.He is in hospice. He lashes out too. But I think he is not getting the care I give my spouse. I pray and just ask God to help me and just give another hr., another day or some peace and understanding. You inspired me and I thank you for that. 🫂

@crumblingaway Oh, my, I am so sorry you are dealing with all of this and he isn't even grateful. You do recognize his pain & anxiety, but he just doesn't "get" yours. After your comment about his relationship with his family, this might be a learned behavior - but no excuse, you need help.

Have you talked to either the oncologist or radiologist about a support group? Treatment centers often know about many - for the patients, the caregivers, for both together, even for kids if you have them. Or they may have a social worker with resources. Also, sometimes it is helpful to the patient to have some anti-anxiety meds to smooth things out.

This can be a great place to air your feelings, and to get coping suggestions from others who are in the same situation. Some are even virtual, so if you don't have the energy to go one more place, you can check in on line.

Do you have someone to caontact to get this rolling?

After care giving for my 93 year old mother 11 years ago and now for my husband with early dementia, I have such empathy for you--because the verbal abuse was (is) for me the worse part. Trying so hard for someone who is disrespectful and even hateful--what a downer. Dear Crumbling, I think you need to see his doctor, alone--no telling what he has been saying. It is not normal for you not to be going with him--and not normal for him to insist on that. My guess is that he is telling a tale, blaming you. I couldn't believe the things my mother told her caregiver, her counsellor, her psychiatrist--all of whom I had set up to help her (I was 2500 miles away with frequent visits).
Help should be available with his medical resources--the doctor needs to hear your side of the story. There's meals on wheels, visiting nurses, physical therapy--it would be a good time to be over 65 and have Medicare but I guess you are too young. One practical suggestion, well, two--leave the room, don't just be quiet when he starts his verbal abuse and say, yes (in a serious and loving way)--why don't you see if your parents can do a better job. Dealing with threats head on might slow them down. I just read Sue the volunteer's suggestions so help is coming in for you from this support group...Courage, strength and love, Carrie

So sorry to hear what you are going through. My husband has advanced stage iv lung cancer and advanced copd. He does not abuse me in any way, but he refuses all help that has been suggested to him. He has been on oxycodone since 2018 due to spinal stenosis and degenerative disc disease. The problem was the he got addicted to them and abused them. He overdosed on them in september this year and was taken by ambulance to the hospital. Then on Dec 11 he had his firt chemo treatment and he has not been himself since. On sunday, I had to call the ambulance again because he went in respiratory distress and was again non reponsive. Well, on wednesday he signed a AMA form and called me to come get him. They were giving him 5 mg oxy while he is used to taking 100 of oxy at home. This was approved by palliative care. IN addition to his 80 mg oxycodone he always takes a day, they added 20 mg of oxycontin er10. His co2 levels were critical. The hospital wanted him to use a bipap there and at home, but he refused. They also wanted him to eat thickened food and drink which he refused to do. When he went into the hospital he had a DNR written up but changed it while there to full code. The bipap would push out the co2 while he was sleeping so that this would not happen again,but he said he did not need it. He does have oxygen at home which he rarely uses. The doctor told him the importance of maintaing awareness of the respiratory effects of escalating pain control with narcotics. Said there may come a point that pain control and a full code status might be imcompatible. In other words, they may not be able to bring him back at some point. He is cachetic which means he is wasting away. He only wants to be home so he can use his drugs. He sleeps most of the time but when he is awake, he grunts, groans and talks to himself. When he talks to me, he is so confused. So while I don't have the abuse like you do, I do have the loneliness. I have people to talk to but I don't think they really understand what us caregivers have to go through. Venting online is helpful but talking to someone that undertands is what is missing for me. Praying that you get through this.

@denise96
Your story sounds very familiar. My hubby started taking oxy many years ago, when everyone believed it was not addictive. Pain specialists (numerous) authorized high doses. When we learned how dangerous it was they tapered off. He had spine surgery in 2019 and continued with lower doses. Today, pain from his back, cancer, arthritis.... necessitates its use.

When hospitalized, he wants to come home and recently left skilled nursing/rehab AMA. They had lowered his dosage and he couldn't drink there. I can't reason with him due to dementia so he continues with both.

I hate enabling his addictions but can't live with the verbal abuse I have to endure if I say no.

Being a caregiver stinks! Others seem to think I'm a saint but what they don't know is I'm dying inside.

Wow! We are in the same boat except for the drinking and dementia. My husband used to be a heavy beer drinker but he quit about 7 months ago when it began bothering his stomach. I agree with you when people say you are doing such a job with taking care of him. The only care I give him currently is keeping an eye on him when he is smoking. But putting up with all the loud ridiculous noises is about to drive me crazy. He does make his own meals. They are all microwavable. He makes his own coffee. If he asks me to help, I will. But he always says he can do it himself. He does not drive anymore. We only have 1 old car and I cant afford a car payment at this time if he would wreck it. Yes, it can be lonely and unless you have a friend that has gone thru this, people don't really understand. I know I have it easier than others and for that I am thankful. But I believe with the narcotics and the copd along with the lung cancer will kill him soon. the doctors told him this. I hate to be the one who worries everytime he falls asleep worrying that he may not be able to be resusitated. I am not going to say anything anymore. Perhaps quality is better than quantity at this point. Hang in there.

I just can't win this game and likely have to just accept that I'll be a punching bag for the next 4-5 weeks (or however long it takes for treatment side-effects to wear off and recovery to begin). Two more chemo appts and 11 more radiation treatments. I understand this is physically taxing on him in addition to mentally challenging. Having to eat large quantities even when not hungry to keep from losing weight, an absolute fear of a feeding tube, soreness and pain in the mouth from radiation, all on top of a cold 2 weeks ago that seems to want to linger around.

I get that all this has made some very large blinders to what I've been up to but I just need to be seen and acknowledged by him for one second! I spent hours in the front yard last weekend at the tail end of a cold tidying up things to keep the new HOA management company away as things had gotten out of hand given my time, I run to the grocery store every other day getting things in hopes he will eat them, I got on my hands and knees and scrubbed the travertine floors and shower after hearing the house is "filthy", laundry every other day, today I have to fix a toilet that decided to freeze up the handle and no longer flush. I'm exhausted.

And friends? No, really. None. Zero. I've reached out online to those I once called friends and it has been radio silence. I know it's hard to know what to say to someone going through something negative and to willingly expose yourself hearing about negative things but dang.

Mayo does offer a support group here for caregivers weekly - it just unfortunately happens to be the one hour of the week I am committed to our business and need to be present for that. My luck...

Good Morning! How has your day been so far? Mine has been kind of quiet as my husband sleeps alot. but after he has taken his narcotics, he starts to make these horrible grunting noises, hollers at the tv and sometimes he slurs his words when talking to me. He talks to himself constantly. Then he gets angry and starts yelling and swearing about everything. I try and stay in the other room where the kitchen and dining room are. Can you get someone to stay with him for a few hours so you could get away? Go shopping, go eat somewhere or just ride around. Are you spiritual? If so, do you have a priest or pastor that you could meet somewhere for some prayer and encouragement? I can't afford to pay someone to stay with him, but I do get out. I won't leave while he is asleep because I worry he will stop breathing. But once he is awake, if I have somewhere to go, like grocery shopping, I go. But like you, I try and buy him things that I think he may like, but usually he won't eat it. I don't cook for him because he does not like whatever I make. So he makes his own microwaveable meals. He drinks about 12 or more cups of coffee and many times lately, he forgets to put the cup under the keurig where the coffee comes out and we have a mess. Yesterday, he was dizzy and his balance was all out of wack, but he refused to use his walker. So I just let him lurch around. I live in Pennsylvania about an hour away from Pittsburg, but we use the hospital in Indiana pa. It is much closer and I don't have to deal with all the crazy drives in pittsburg. I admire you because you seem to be able to handle the mechanical things that break. I also admire your patience but if I were in your shoes, I would tell him enough is enough. All the cleaning and taking care of a business is not going to be good for your health. You need to take care of YOU! It is called tough love. You don't need to take the abuse he is dishing out or you will end up in the hospital yourself. I don't know how old you are but no matter, that kind of behavior he is showing would wear anyone down. If he has dementia, it will only get worse. Maybe you should consult an elder attorney about the financial things if you were to put him into a nursing home. Or talk to your doctor and ask questions about whether or not he is at the point to be in an institution dementia patients. It is time for you to take a stand for yourself! Keep in touch.

Is there a downside to him going to his parents and staying with them for a while, as he suggested?

The downside is that his mother estimates calories and protein and isn't really scientific about it. Hasn't really been showing a lot of evidence she's been listening to food requirements. In addition, we live 9 mi away from Mayo Clinic where he's getting treatment daily vs 30 miles away at their house.

As for today... the pain went from about a 3 or 5 (depending on the area) to a 7 or 8 yesterday. He started taking the Oxycodone for the pain. I made him a smoothie and even that burned going past the mucositis and tonsil. He has HPV+ tonsil cancer - rather large, surgery was not possible without an enormous loss of the soft palette. He just turned 50 (I'm 48) so prognosis SHOULD be good but it's hell getting through it. He has no taste right now, pain eating, needs to eat 3000 calories daily and is terrified of a feeding tube in his stomach. Neither of us are spiritual. Can't afford anyone to help either. Both of us aren't working as we were trying to take time off to establish a business (an app - would be a retirement plan of sorts down the road to make passive income), hence the reason I'm having to seek employment ASAP once he's on the road to recovery. We're pretty locked down in terms of budget.

I imagine my husband could relate to your experience, @denise96. He cared for his grandfather by himself here prior to my moving in and there was a lot of things like that - overflowing coffee makers, fiddling with the thermostat too much, having panic attacks when not able to find his labeled lunch in the fridge. It sounded like hell.