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Do not confuse grimacing and moaning from delirium or nightmares or drug-induced halucinations or delusions to be pain.
Neurological and neuropathic changes can cause twitching, kicking, grimacing and vocalizing that is easily confused with pain.
Here is an portion of an NIH study regarding the side effects of opiates at the end of life.
It has recommendations for options:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC353038/
From the link: [ Reduction of opioid dose and/or rotation of the narcotic, i.e., a change to an alternate narcotic, initially at a lower dose equivalent, are reasonable treatment options.
For instance, a patient who becomes delirious with morphine may be switched to hydromorphone or methadone.
The benefit of opioid rotation is attributed to change in receptor activity, asymmetry in cross-tolerance among different opioids, differences in the efficacy of different opioids, and changes in toxic metabolites.22
When a narcotic is ineffective, the tendency is to give more drug. Lawlor cautions physicians to consider 5 reasons that a narcotic may not be working ]
They were giving him morphine but he would wake up combative so they are now giving him a shot every hour
I just want his suffering to come to an end
It’s so sad but nobody wants to see their loved one suffering
Prolife1:
You are welcome.
Yes, there is plenty of money already available for alternative pain relief methods.
People have to simply request them and use them. It's not about about being responsible, proactive and compassionate and paying attention to the side effects of pain and anxiety meds.
These methods work.
Also medications are extremely expensive, and perhaps more expensive than some of the alternative therapies.
Also, a lot of problems with elder patients are actually caused by over sedation or psychopharmaceuticals, too. Sigh!
I am glad that you are looking into these methods, as your initial approach.
I have used alternative pain relieve and anxiety relief with the person I am caregiving, too.
I agree about the smoking, it will alleviate a lot of pain, within a short time frame, if you mother can quit smoking.
Pain and anxiety medications should be a last resort.
Who will be providing this highly skilled one to one care?
And who will be paying for it?
The authors set out... do they indeed. I've met my share of nicely turned out young graduates with their clipboards and their information folders telling everyone else how it's done. What I'd really love to see is one of these starry-eyed researchers after a night on duty in a care home doing the actual work.
I agree. It is peculiar to the USA that the first line of treatment is to over sedate and to warehouse old people, rather than keep them engaged, both physically and psychologically, in society.
Non drug methods however require time and patience.
Sedating a patient makes the caregiver more comfortable and makes their job so much easier. They may convince themselves it is in the best interest of the elderly person, but new studies are showing that is NOT ALWAYS TRUE.
I am very concerned that anyone, in our society would turn a deaf ear to valid research regarding alternatives to sedation and psychopharmaceuticals.
I am also very concerned that anyone would object to oversight regarding the appropriateness of drugging, based on each individual patient, and they would prefer drugging to at least first attempting more labor intensive proactive actions for their loved one
You mother is lucky to have you on her side, Prolife1.
According to the Harvard Newsletter drugs may NOT be the best choice at all for anxiety:
https://www.health.harvard.edu/newsletter_article/Treating-generalized-anxiety-disorder-in-the-elderly
******Key points
Elderly patients with generalized anxiety disorder tend to experience more physical symptoms, and less intense emotional disruption.
Drugs may not be the best choice for older patients because they are more prone to side effects.
Cognitive behavioral therapy is a good first-line psychotherapy for treating generalized anxiety disorder in the elderly.
Non pharmacological, but more hands on methods to relieve pain are:
Also her are Physical therapy techniques, that are labor intensive, that can be used in pain control:
Massage: Touch is probably the oldest method of relieving pain and discomfort. Therapeutic massage using stroking and gentle kneading may be used to reduce muscle spasm, relieve pain, aid relaxation, and maintenance of joint range.
Cold/Heat: Where local skin sensation is normal and tissue is intact, local applications of heat and ice may be used to reduce spasm, for acute inflammatory conditions, and over myofascial trigger points.
Electrophysical Modalities: Transcutaneous electrical nerve stimulation (TENS) is the only electrical modality currently recommended for use in the presence of active neoplastic disease. Therapeutic ultrasound, interferential or pulsed shortwave diathermy relieves pain and muscle spasm and may be used over normal tissue and for non-cancer patients.
Exercise: Systematic reviews of observational and randomized controlled clinical trials conclude that there is strong evidence that participation in regular physical activity reduces the pain and enhances the functional capacity of older adults with persistent pain. Because persistent pain is commonly associated with prolonged physical inactivity, these effects may be partly due to the reversal of the physiologic consequences of reconditioning
Also here is a link citing a study for non drug methods for dealing with dementia, of course, again, it requires caregivers to be engaged with the patient.
www.futurity.org/5-ways-ease-dementia-without-drugs-868592/
****A new study is the result of two decades’ worth of research on drugs like antipsychotics and antidepressants, and non-drug approaches that help caregivers address behavioral issues in dementia patients.
The findings recommend that non-drug approaches that focus on training spouses, adult children, or staff in nursing homes and assisted living facilities should be the first choice for treating symptoms such as irritability, agitation, depression, anxiety, sleep problems, aggression, apathy, and delusions.
More....
****GAO report
Coincidentally, a new report from the US Government Accountability Office, addresses the issue of overuse of antipsychotic medication for the behavior problems often seen in dementia.
It finds that one-third of older adults with dementia who had long-term nursing home stays in 2012 were prescribed an antipsychotic medication—and that about 14 percent of those outside nursing homes were prescribed an antipsychotic that same year.
The GAO calls on the federal government to work to REDUCE use of these drugs further than it’s already doing, by addressing use in dementia patients outside nursing homes.
More....
*****The authors lay out five non-pharmacologic categories to start with based on their review of the medical evidence that have been shown to help reduce behavior issues:
Provide education for the caregiver.
Enhance effective communication between the caregiver and the person with dementia.
Create meaningful activities for the person with dementia.
Simplify tasks and establishing structured routines.
Ensure safety and simplify and enhance the environment around the patient, whether in the home or the nursing/assisted living setting.
[ Prolife1 wrote
4 days ago
Gershun, maybe you dont want to have people cleaning you up but I want to see every one of my many kids before i die. its an individual decision that belongs to the individual. Choose your battles. YOUR battles, not others'. ]
---------------------
Prolife1:
I a so sorry you are being personally attacked here simply for stating your generalized opinion
I find it odd that anyone would object to oversight.
Oversight, simply ensures that family caregivers or others are abiding by the request of the elderly person and that no harm is being done for money or simply because the caregiver is exhausted and no longer wants the responsibility of caring for an elderly person.
Some here are automatically assuming that they are heroes because they prevented a miserable prolonged death.....Well, if that is true, the WHY WOULD THEY FEAR OVERSIGHT?
If a person is doing the right thing, they would certainly be open to others who feel that the parent was not treated properly and they certainly would NOT fear OVERSIGHT
The objection to OVERSIGHT is odd.
If someone knows they did the right thing, than why care about oversight?
I WELCOME OVERSIGHT, because I know without doubt or guilty conscience that I am truly looking out for the best interest and will of my charge.
Prolife1, It should be, as you state, an individual choice, based on each unique circumstance.
But this much needed call for the right of the elder to choose keeps falling on the deaf ears of those who apparently wanted total control over their parent's end of life.
If the parent had a living will that stated, they wanted to be drugged or DNR, than, why would oversight be feared.
The person in charge of caregiver oversight would certainly also abide by the elder's last recorded and stated wishes.
Why on Earth would anyone object to oversight over relative caregivers or paid caregivers to ensure that the elder person's wishes are being obeyed?
If the posters who are attacking you actually bothered to read the links I posted, then they would know that there is NO DOUBT that patients ARE dying and suddenly.
It is almost an epidemic.
It is much easier for caregivers to sedate their elder patient, rather than using other more hands on labor intensive methods of relieving pain or anxiety.
Sadly we hear complaints all to often....One day the elder person is sharp and the next day they are drugged into zombie hood, a few days later they are dead.
I think the people here have not thoroughly read the links I posted.
If they had, there would be no reason to object to your opinion.
Someone commented, and I paraphrase, on how they would not want to be in a nursing home having their life extended because the patients there look like zombies.
Well, if that is THEIR choice, than so be it.
But they might do well to consider that perhaps the reality is the elderly look like zombies in the care facilities because they are being over-medicated with chemical constraints. .... Or drugs that keep them sedated and less troublesome.
The other point is that even if it is the elderly person's choice be to be drugged into compliance, there are many other elderly who MAY prefer to remain alert, until the end.
It should be THE ELDER'S a choice. THAT IS WHY OVERSIGHT IS NEEDED.
It is needed to ensure that an alert elderly person is not being drugged against their will by paid lazy or overworked caregivers, or exhausted or greedy relatives.
-------------------------
[ Prolife1 wrote
4 days ago
I love how you guys' "compassion" is all about taking people early rather than for those who went too soon and their kids. who didnt get to say goodbye. I am noticing a pattern. Not one of you certain few (and you know who you are) are a bit sorry for what actually happened exactly as Im stating. If someone came on here and said they hastened someones death youd trust them and feel sorry for them. Very telling. ]
--------------------------------------
Prolife1, I agree and I think it is important to NOT encourage over drugging. There are non drug methods to alleviate pain and anxiety.
You are right, too, that it seems that there is a steady drumbeat of support for over-drugging with the claim that it was ALWAYS DONE IN THE BEST INTEREST OF THE ELDER and as if it is always a heroic thing to do.
Well maybe it was. And, maybe it wasn't.
That is why oversight is needed, and anyone who objects to oversight, is exactly the type of person who MOST needs oversight.
Barb, Im going to try to get her to allow me to handle her medical. My sister is states away and doesnt show up when theres a disaster. Im a first responder so it just makes more sense for me to help her. Also, my mom and I are the only Catholics in the family so our ideas about life are the same. it makes sense but my sister for some reason (maybe money??) wants all power. Shes always been a control freak.
Country, she has no qualms about killing the unborn and hastening death. None. But she wouldnt want to be prosecuted. Thats it. She has no shame about her position and I should have seen the writing on the wall but it was a fiasco with my MIL's death the day before. We knew she was dying already.. my dad should have died of a stroke like every single other person in his family but this happened because of the system we have...and people not valuing the elderly. Its life in America these days. Im not confused.
Will the AL not allow you to see your mom?
Have you contacted the ombudsmen about that?
Imagine putting this to your sister. "You killed your father. You are now doing the same to your mother, while cruelly preventing her from seeing her child."
Would she freely admit it? Would she admit it, but offer justifications? Or would she say that it really isn't like that?
The reason for scepticism isn't lack of sympathy for you. It is the degree of wickedness you are alleging. This isn't just "life," is it?
Your mother has a right to see you if that is what she wishes. She has a right to all the protections that the state provides for the vulnerable. You can assist her to access those.
If, on the other hand, she complies with your sister's wishes because it is easier and makes for a quiet life... that's still sad but it isn't criminal.
What would you have to do to reopen communications with your sister and change this situation?
Countrymouse...she killed my father and made sure his natural son and daughter were not allowed to come because she is really mean and controlling ...and Mom is afraid of her because she controls her money. Its life.
Again, no sympathy for those who want to see their parent to see if things are okay. very telling.
Prolife, I think its very telling that your idea of "compassion" is to prolong a miserable suffering life for your own selfish needs. Its quite ironic you don't want your sibling to control your mothers death yet thats exact what YOU plan to do. You want it to happen on your terms.
ProLife, there are certain blunt realities around death that you just seem to wish away. You don't get to choose when or how you die. You may or may not get the option of taking leave; you may or may not be in a fit state to do it. Losing people you love is always bloody awful. I wonder if focusing on someone or something to blame is one way of channelling the pain and anger of loss.
Can't she leave? It's not jail, after all. She can sign herself out and go live somewhere else with whatever level of support she needs. She can rescind the POA she gave to her bullying daughter if she wants to and reassign it to you.
Or does mother simply like to stir the pot and make everyone unhappy? Does she tell "bully" sister that YOU'RE bullying her?
I guess different folks here had different experiences of Hospice. My mom, who had been in a NH for 4 1/2 years with dementia, CHF and various other ailments, fell, developed pneumonia and was sleeping around the clock before we started Hospice. There was no "saying goodbye", no meaningful conversations. Heck, there hadn't been a "meaningful conversation" since mom had the stroke in 2013.
We didn't hasten mom's death. She was writhing and grimacing. It seemed cruel to let that happen. Morphine allowed a calm last couple of days. No communication, but lots of music and prayers.
My MIL has been on Hospice since January 2017 and is still in her senior living apartment and still "okay", as far as "okay" is any more. She is on hopsice for a gastric bleed complicated by her COPD and heart ailments. She has moderate dementia as well, but the hospice is for the GI bleed.
We moved to at-home hospice because my MIL did not wish to undergo any further diagnostic testing or treatment. The GI bleed had not been located, and after 12 incidents of anesthesia and still no success, she was done. All that sedation likely sped up the dementia.
At this time, we simply have the nurse coming by each week to check on her. Social worker comes out each month. MD comes out every two months for recertification. We've had to call them 3 times for events outside our norm (nosebleeds that wouldn't stop, and a sudden loss of vision in one eye that was deemed a clot), and someone either called or visited in a very reasonable amount of time to either provide advice or assist.
Hospice has not pushed any medications on her - she's on her normal regimen of meds for her heart conditions and COPD. They added Ativan that is "as needed" when her breathing tightens up to the point where it causes distress. She's only taken 13 Ativan in her 18 months on Hospice. They've never pushed it or any other medications.
I have no issue recommending early placement on Hospice. They provide equipment needed (and as needed - you don't have to take everything offered at once!). They send the nurses and MD to you, rather than having to go out. They provide support to the patient AND the caregiver. I feel hospice and their services have extended her life by allowing her to remain in her current location and allow me to fly in less often because there is professional support who keeps me informed as to changes and needs. She remains on hospice because the life expectancy is 6 months, even though she's been on hospice much longer than that. Another family member lived for 3 years on at-home hospice services. It's simply not a death sentence. People often don't call hospice in until the very end, and people sometimes don't understand the services they can provide that can help the patient and the caregiver improve end-of-life care, no matter how long that may be.
Don't hesitate to at least talk to a hospice service - you likely have many choices and can take your time to find the service that fits best with your situation and beliefs. You may find that it is a great support and benefit to both you and your mother.
If you have other questions, please don't hesitate to ask. Just know that there are many of us who went on hospice early and it's not a death sentence, but a great help.
And DO keep it in mind. Don't struggle on alone past the point where you're managing confidently.
Also...
I get an impression from your post that you are anxious that as soon as your mother hears the word hospice it will be as though the Grim Reaper had turned up on the doorstep and rung the bell, and your mother would abandon all hope. It really wouldn't be like that - these are health care practitioners like any others, there to support your mother and you. What about calling the provider the NP suggested and having a preliminary chat, just for information and to familiarise yourself with what they're like?
JoGreen, my Mom was in palliative care, not hospice but she was unconscious her whole last week of life. We were told she was passing and the morphine that was administered to her was to relieve her erratic breathing. It was not enough to kill her. She passed after seven days of having small amounts of morphine given to her. She would have passed anyway. This way she passed comfortably.
Garden Artist that was a passive aggressive reference to me. And my husbands mother died the day before my dad died so we werent available even though i was checking up and begging to come see Dad in the hospital before we found out his mom was dying.
As for your Mom being in Independent Living [as per your profile] but I assume now has moved to Assisted Living for a higher level of skilled care, may I ask why you didn't volunteer to be Mom's full-time caregiver?