my mom is getting tired and together we r unable to lift and move by ourselves, I can't convince her to hire a helper for intermittent aid. they will try to get him in a facility, but he doesn't want it. I need to fix his mouth, help. he has COPD and Congestive heart failure. While in Hosp in the rehab place he was left unattended for 3 hours in a chair. something happened during this time, and he can't clearly communicate. I can't understand him well. hospice was called to offer assistance to my mom, we r not giving up. hospice can leave for all I care, and f.u.-morphine. I believe he can get better just that I need to enhance his care, somehow, plus he hasn't got out of bed for a week. I dislike the word hospice, and I may be really tired, but the word feels like impending death. My brother is taking advantage financially and my mother is defending this vile man as he tries to declare her incompetent after he slapped her and then screams at me if a try to talk to her about the futility of enabling addicts and abusers. this feels overwhelming Cuz it is, and I need help. Please advise my mom is so mean to me and my brother is a _______, I dnk but its sick as hell, i want my dad back and it may not happen, if i leave it to hospice he dies, and if i leave it to my mom, she gets too tired, and Blake won't even lift a finger to help and him and his GF are plotting something. i work too far away to stop it i think. Rick Simpson Oil would be great if it's allowed, or even a tincture thc. Any thought s prayers advise? greatly appreciated
Your Dad has so much wrong with him. COPD alone keeps him from getting enough oxygen into his system. Then throw in CHF where the heart is not pumping correctly, another problem with oxygen. And hevis on stomach feeding. Not that people have not improved on Hospice but its rare. A doctor usually only signs off if its felt death within 6 months.
Hospice is there for Dad. He is to be kept as comfortable as possible. I would ask about the Thrush and what can be done for it. He should not suffer from any discomfort or pain that can be helped. Morphine is done for comfort. Like said, it eases breathing. When people can't breath correctly it causes anxiety which makes everything worse.
I am so sorry what you are going thru with brother but seems your parents made this monster. Mom will probably let him in no matter what u say. She should have called the police when he hit her and got a restraining order. She has to do it. So, really nothing u can do.
For you, you need to realize Dad is not going to improve. His body will eventually shut down. If you haven't, you need to talk to the Hospice nurse. She can help you understand how it all works.
So sorry you have to go thru all this.
My mother developed gout while she was on hospice, and they treated it with medication and diet change.
She had Covid while on hospice. She was treated and recovered.
She had leg ulcers that developed while she in rehab prior to hospice. Hospice provided wound care and treated them until they healed.
She only received morphine and oxygen on the last day of her life when she was mostly unconscious already. She was on hospice for eight months and died peacefully in her bed without distress.
I wish the same for your dad -- comfort, care, and peace.
Hospice is not looking for ways to kill someone -- they're focused on quality of life rather than quantity. That means you aren't going to go to the hospital for every little thing anymore and they aren't going to try to fix what can't be fixed.
You just have to understand that trips to the hospital won't happen unless you take them off hospice. If my mother had fallen and broken a hip, for example, we would have taken her off hospice and sent her to the hospital for treatment. She also had congestive heart failure, and that was not going to get better with a trip to the hospital, so she was treated for that at her nursing home.
Ultimately the meds for her CHF ceased to work anyway, and we gradually withdrew most of them (but not all) a few weeks before she died. Her system was clear of all those drugs that had kept her going far more years than her body really was meant to go, and she died very peacefully as close to a natural death as you could hope for. Had she died a truly natural death, she'd have been gone seven years sooner when she first developed all those issues and the doctors starting flooding her body with drugs.
On the other hand, my dad was diagnosed with cancer and died six weeks later. He spent the last three weeks on hospice care at home, and they needed to do very little because there wasn't anything else wrong with him. They were there for me when I called after two nights of no sleep and said I couldn't do it anymore, and the nurse was there with us when he died after ensuring his final day was comfortable and peaceful.
With a Hospice referral, there is a terminal diagnosis and that Dx will cause your dad's death at some point in the future, your job is to improve his quality of life while he remains in this world. You want to enhance his care and are unable to do that without help. Please allow Hospice to come in, and override your mom's wishes to not have an aid in, it's the only way that your dad will get the care he needs. Hospice is not a 'death sentence' although it is palliative and not always interventional medical care. As others have stated, morphine will provide him with greatly needed relief from the COPD - and small doses won't snow him although it may take a few days of drowsiness while he adjusts and he may require a day or two of sleep to recover from the strain of labored breathing.
You have to get the oral thrush treated and that can be either with oral swabs of anti-fungal or a systemic one. His mouth is likely too sore to handle any food intake, it's very painful when left untreated. He's likely loaded with Candida, but the die-off from yeast is severely uncomfortable without adding binders to the regimen and with his terminal diagnoses (Dx), I'd suggest going with the oral med and not tackling the systemic overload. His Dr. should be able to prescribe this with a phone call and ample description of his oral mucosa. Look up thrush images to be certain that's what you're seeing. I could name an OTC anti-fungal, that one can order, but I won't because you need to bring in help and not DIY your dad's care.
You also need to clean for now and then dispose of and replace his entire oxygen (O2) tubing set up because it's colonized with yeast; do a full replacement once the oral yeast is being treated and then routinely wash it all and replace per the usual routine.
You're not knowledgeable enough to commence RSO, which btw, does not contain THC, and most all of it on the market is totally fake and made with dangerous petroleum distillates. If your dad's MD prescribes THC and you're in a medical or legal state, it's a wonderful option for improving his appetite and enhancing his overall sense of wellbeing. That could be in oil form that would be placed in the check pocket for absorption by the oral mucosa. Ask his MD.
Your brother is a whole other issue and if he has addictive tendencies, he cannot be in the home with narcotics in use for symptom management. This too begs for your dad being placed or having someone in attendance at all times to monitor the medications and ensure that they're not tampered with. You'll have to report his physical abuse of your mom, it may the only way to get him safely distanced from your parents and your own self.
You need to wave the white flag and recognize that you're in way over your head. You don't mention any medical or legal POA or Advance Directives. I hope it's not your brother who's in charge because he's unfit if suffering addiction. Do you have an older or more versed family member to turn to for help and guidance? An attorney who's worked on estate matters with your parents? You need a personal advocate or guide to help you to manage all of this. You sound like you're in an understandably raw state and doing your absolute best but with too many issue to tackle. You're acting out of love and you need to add in a practical angle to be able to manage and do what your parents need someone to do. One basic thing is deciding to bring in an aid to prevent bedsores and provide cleanliness and comfort (dad may have thrush in genital skin folds too); an aid can do a lot to assist you with his cares, esp under the supervision of an RN.
I'd suggest you start with a call to dad's MD.
Best -
I reread the post after commenting and saw that the OP's dad has a feeding tube placed, no idea if it's an NG (mouth to stomach) or PEG type tube. If an NG tube, that would also be colonized and require replacement.
As an RN having worked in hospice and a wide variety of medical care settings, I've experience good luck with the swabs and with a terminal patient, the swabs are the sole option because any liquid reaching the back of the throat would be an emergency and they'd be unable to swish and swallow or spit the liquid nystatin if not being used vbery carefully with oral swabbing.
As a survivor of Lyme that had me bedridden for nearly 2 yrs, I was able to regain my vitality with over 2 yrs of combined antibiotics, herbal tinctures and other forms, and high-end nutriceulticals. I'm left with a lot of collagen damage. Of course, I had to work on my microbiome as part of my recovery and took oral Nystatin (for gut candida) and then an herbal prep (for systemic candida) that is even more effective than any Rx. My body's response to yeast die-off was almost enough to put me off the 2 different treatments: severe muscle and joint pain, etc. I has learned to deal with the toxic die off of the multiple organisms with Lyme, but yeast die-off is the worst of the 'Herx' response.
I would, if caring for any terminal client, use the localized version to kill the oral thrush; it just requires more frequent and very thorough oral swabbing and cleaning after.
An aside, as an RN, with the extraordinary illnesses, infections, wounds, etc. that I provided care for, there were 2 things that I couldn't handle without gagging. One was the odor of upper GI blood exiting and the other was doing previously neglectful oral cares on anyone on a vent or feeding tube. One has to really get in there to thoroughly clean a non-responsive patients mouth. It's no wonder nurses are into a bit of cryptic humor...
Also keep in mind that while your dad may not 'want' to go into a managed care facility at this juncture, there may be no other choice. If you can't lift him alone, and you have no help coming in, what other alternatives do you have??? Also don't insist he eat when he refuses food, because that could add to dad's discomfort as well. Speak to hospice about what transpires as the body's systems begin to shut down, IF that's what's going on with your dad.
I'm truly sorry you're all going through this terrible situation, and that your brother is adding to the misery. I am sending you a hug and a prayer, but no medical advice, except to advise you NOT to self diagnose or prescribe anything for your dad w/o the doctor's knowledge or hospice's advice. You don't want to make him worse off than he already is b/c your guilt would eat you up alive, God forbid.
It's nearly impossible to bring a person to the ER without ambulance transport and it would result in dad being hospitalized, something the OP isn't yet prepared for. She said her dad is bedridden.
Tough one, eh?
If he shows up and becomes physical or even just screaming, etc., you call 911 and let them know he is a danger to you & your folks.
As far as your dad--don't do ANYTHING that's outside the box. I have never heard of rick simpson oil--and I would be super hesitant to try anything to get dad to be able to eat that wasn't dr approved.
But first, you have to deal with the thrush. Please get dad to the Dr or ER. Thrush will overtake the body and can be so nasty. My FIL was on Diflucan daily for months as thrush was so unpleasant for him.
As far as fighting hospice--hospice means relief, or care. It is not intended to kill anyone. I just lost a friend to pulonary fibrosis and she was alert, talking and loving on all her family members until she passed, quietly an on her terms.
Hospice will help you, and provide, if needed, social workers to help you on this path. Please don't just dismiss it out of hand. It could be of great comfort to you and mostly, to dad.
please research what Hospice actually is. I’ve read here many times where their loved one actually lived a long time after , months upon months to years.. Do your due diligence… maybe it will help you.
Hospice will provide support to your father. A RN will visit weekly, a CNA twice a week, clergy weekly, a social worker monthly. Plus they will bring in supplies. For my mom ,depends , chux pads , lotions, mouth sponges, a hospital tray table , the wheel chair ,then the hospital bed , the better wheelchair that tilted back, the hoyer lift when she could no longer stand ,All in Support For Her …
Hospice will reevaluate periodically.
I have no advise for his health . But, if the Dr has suggested hospice, whether hospice is on board or not, the outcome will probably be the same . It a matter of making your dad comfortable.
Is ISSUE with hospice care though is there would need to be someone responsible delivering the meds. So, if that's the reason you're saying "fk hospice" -- I totally get it.
If your brother shows up again, call the police and tell them about how he hit your mother. But please, consider Hospice. They'll help him be comfortable and make the most of the time he has left. Patients usually do feel so much better on hospice, and the most common answer is "I wish we'd done this sooner."