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So, my MIL who is 90 has recently had a bad bout of back pain. She is on hospice and we are managing it with morphine and keeping in close contact with the Hospice nurse. I know that she is experiencing a lot of pain and we are doing everything in our power to help.


I've posted here before, but just for those of you who don't know my mom in law is French, has been living with us for almost 4 years, has dementia and congestive heart failure. She has always had a difficult temperament and is a chronic complainer. She shrieks when she can't find her cigarettes or comb or bras, and is convinced a stranger has entered her room and stolen her affairs. But this is major shrieking and please believe me, I am not trying to belittle her pain.


I myself have had a continuous head pain following a blunt head injury eight years ago, so the yelling does not help my health condition. I am feeling so shaky and rattled by this. I am currently unemployed but looking for work, and have become her caregiver mostly by default. My husband acknowledges that it is difficult, but he also is away at a supercharged job 50 hours a week while I am often here. We tried to put MIL in respite care for 6 days but the facility could not accept her due to her smoking.


How do I stay grounded and calm when screaming is happening around me? There are times that I feel am on the verge of a nervous breakdown. She also has significant hearing loss, so more often than not I cannot communicate effectively with her because she is not wearing her hearing aids. These incidents of her screaming in pain occur mostly in the morning when she wakes up.


What should I ask the Hospice nurse? The medical staff does not want to give her anything stronger (Tramadol) or even an anti-anxiety med because she is a fall risk.


Thanks for any ideas or inspiration.

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Oh my gosh! You have an extremely difficult situation. I’m so sorry. I can’t imagine. I can understand that you are at your wits end. I would understand if you completely lost it. Everyone has a breaking point.

You mentioned respite not taking her due to smoking. Is she willing to do a patch? My brother did the patch.

What about caregivers at your home through hospice? Any help there? How often is hospice there? I hope you get relief soon. Hugs!!!
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Do you have haldol and ativan available? She is suffering from end stage cancer and on hospice, the idea of an increased risk of falls taking precedence over symptom relief of real present problems is ludicrous.


To add, allowing anyone to suffer physical pain at end of life is neither necessary or acceptable, your hospice providers are clearly not doing their jobs.
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NeedHelpWithMom Apr 3, 2019
cwille,

I agree. Not only is it horrible for the patient not to have relief from pain but also for the family to witness her in pain. Not good all around.
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Noise canceling ear protection, the highest quality you can buy. Peaceful music playing through them whenever you need a break.

Question her doctor concerning pain control. If hers isn’t effective, perhaps try something different?

Fall risk is always a concern, but as compared to the pain of terminal cancer, all you can do is rely on your medical experts.
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NeedHelpWithMom Apr 3, 2019
I like that answer, Ann. Very practical. Maybe a baby monitor and escape to the outdoors in nature for a little bit. It’s just a really tough situation.

Plus like cwille said, no one should endure that kind of pain while on hospice.
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Can you asks hospice to utilize volunteers to help? They have volunteers that step in to help.
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sorryselma Apr 3, 2019
Hi NeedHelpWithMom,

We have had a big language hurdle- she does not speak English, only French, so it has been hard to bring on other caregivers or volunteers to help. We live in a small town so it's hard to find other French speakers who can communicate with her.
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Sorry, I guess screaming in pain plus hospice made me see cancer where there is none, nonetheless she is on hospice so she is considered end of life.
I'm glad you got the instructions for pain control clarified and hospice is working with you, hopefully once the pain is under control things will be better for all of you. And do consider trying the ativan if things are getting out of control, you can always discontinue it if the side effects are too noticeable.
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Two sites that can likely help:

Alliance Francaise's site at afusa.org-- I assume you are in the US, but if not, Alliance Francaise is worldwide. They could maybe find someone near you to help.

Also check the Lycee Francaise school network at www.aefa-afsa.org for more resources.

Do you have any sort of college or university that is not too far away? Most schools have a foreign language department and thus teachers of French-- and usually there is at least one native French person on staff. Even if they have no one to help, they might be able to give you resources. A French student who is far along in their studies may be interested in earning some side income for translation. Even some high school foreign language departments could maybe help!

As for the shrieking-- mon Dieu!-- my nerves would be shot within hours! Maybe a doctor can prescribe something mild to calm her?
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Nurse probably does not want to hear her scream
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Selma, I am finding your comments about drugs a bit hard to understand. Mistakes can be serious, and I have been forced to do a lot of checking for myself and my LOs, so I will explain.

Morphine is the strongest of all the opioids. Tramadol is nothing like as strong - I take 100mg Tramal each morning as a prophylactic, and there is no way I am up to requiring morphine. My BIL recently died with acute cancer pain, and he wasn’t getting his morphine every hour. In fact I think the only way to give a more frequent dose of morphine is with a shunt running into a vein, like my mother had at the end. Most of the less strong opioids (eg codeine) are combined either with paracetamol (tylenol) or ibuprofen (nurofen), and an hourly dose would be lethal in less than 24 hours because of the additive rather than the opioid. The maximum safe dose of paracetamol is 4g a day, ie 8 tablets with the usual 500mg dose. I have to monitor my paracetamol intake carefully when I have a bad bout of scoliosis pain. It is important to look at the contents of the drugs, and the amount in mgs, not just the brand name on the packet.

Perhaps you don’t understand the drugs, or aren’t explaining well. It seems very unlikely that a hospice team would get it so wrong, but it would be good to check. See a doctor if you and hospice are still confused. It is important to give your mother what she needs without risking a dangerous overdose.
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sorryselma Apr 3, 2019
Your experience is super helpful, MargaretMcKen. Thanks so much for your insights. I will triple check on the dosage. We have been giving MIL a very small dose of Morphine orally in the am when she awakes - it's 5 mg (or .25 ml). Hospice nurse was just over at the house, and she says it is totally safe to give her this dose hourly if the pain warrants it. It's highly unlikely that we will ply her with too much Morphine; our Hospice nurse and the doc on the case really seem to know what they are doing. Pain is so tough to treat as you know, so we have to figure out the combination of things that work best. I really appreciate your comments that we need to be vigilant about proper doses.
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Selma, I find myself getting angry for you for this situation, which now includes long periods of screaming. OMG!

As if it weren't enough that your home reeks of cigarette smoke because of your poor MIL's smoking, but to read that her habit also prevented her being able to be placed into respite, for YOU to have a break, is extremely frustrating!

And do any aides or caregivers or volunteers have to speak French? Of course, it would be ideal, it would be very nice, but is it really absolutely mandatory?

To be blunt, if God forbid you were to suddenly drop dead or have a serious health collapse (stroke, heart attack, etc.) from the continual stress of this situation, I think your husband would find himself using non-French speaking caregivers and your MIL wearing a nicotine patch so she could go to respite care.
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sorryselma Apr 3, 2019
Hey SnoopyLove,

Thanks for validating things that are on my mind, but that are often hard to verbalize. In the midst of her screaming pain, I ask myself how I got into this situation. Though I feel horribly sorry for MIL, each scream reminds me what a big burden she has become and how unequipped I am to handle caregiving for her.

Hospice has sent over the most lovely people but it requires a lot of extra effort on my part - my explaining a gazillion times to MIL who is coming over and what they do and then serving as French interpreter. She just doesn't process. Because she can still do showers, toileting, and get up by herself, Hospice will not provide outside caregivers. We could pay for one out-of-pocket but they would mostly be to keep her company, make meals, and do medication reminders. Yes, you're right, we could do non-French speaking caregivers and we may have to pursue that path when I can't handle things like lifting, etc.

And yes, I was really bummed about the smoking - but I also understand why these memory care facilities cannot accommodate smoking. We have one other place that might work, but I don't think hubby wants to ship MIL off when she is in so much pain. He is much more open to respite care than in the past but seems to want to wait. I bet a respite facility would know better what to do with pain issues and are better equipped to provide her relief than we are.

Today the Hospice nurse says it's only going to get worse. These four years have taken a huge toll on me, I hope that I can pull together the strength to make it through this period. I plan to continue to take time for myself, but the benefits of taking even a short break seem to have diminished over time.

Thank you for your compassion and kind words - it means so much to me!
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I don’t understand the visa/employment situation between the USA and Canada, but with College holidays coming up in a few weeks, I wonder if you could find a Canadian French speaker who might be interested in a summer job? If you can give a fair bit of time off, it might interest someone who would find it useful on their CV. I am sure that you could find out how to advertise at a College in Quebec, if you ask around. A contact with a staff member in an appropriate faculty might be a good start to find someone suitable. Good luck in such a difficult situation.
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sorryselma Apr 3, 2019
Thanks MMK,

I did at one point consider having a French caregiver (coming for a few months from France) but that's a great idea - Canada is a lot closer!!!! The logistics seemed tough for the French caregiver. Thanks for your support, I am so grateful to this Forum!
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I think the advise re seeking out French speaking organisations and assistance is a great idea. They may even have a service for such needs as your own. My friends mother went to a predominantly Russian nursing home because she reverted to her native language

i have found that airplane silicone earplugs are great at noise canceling and cheap. Ask chemist.

You need respite. Take the fags away and put her on a patch
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LoopyLoo Apr 4, 2019
Crazy how some can switch back to
their native or second language! My aunt had dementia and English was first language, but also grew up speaking Polish. Could still converse in it until her dying day. Same deal with my husband’s grandmother, only for her it was Swedish.
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Don't forget to ask hospice about Ativan. That may help her calm down.

Don't buy her cigarettes anymore. My aunt burnt down her daughter's house on accident. Oxygen and cigs don't go well together, especially when that person falls asleep. MY poor aunt lost all her beanie babies :(

Thank goodness no life was lost.

Try the Sony noise cancelling head phones. I think those are top of the line, but they work very well.

Play her favorite music and put some of her favorite movies on.
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gdaughter Apr 6, 2019
check out reviews before investing in the headphones...Bose is a big brand but there may be others...maybe look at Amazon...or the cheaper alternative...industrial earplugs:-) I wonder how the neighbors are coping with the noise?
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Introduce new people to her as new friends, Hi Mom, Jane is visiting with me today.

Keep it simple.
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It is mostly in the morning that she has issues. Possibly a wet diaper? Perhaps she is stiff from laying in one position. Do you have one of those bed pads that pump air so she doesn't get bed sores? My aunt has one. The lady in the other room does too. Ask Hospice. They can prescribe one and get her one if she doesn't already. Hospital bed I am sure is in place so you can reposition the bed up/down, legs up/down, etc...
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sorryselma Apr 4, 2019
Hi MAYDAY,

Thanks for all your wonderful posts. That a great idea about the hospital bed. She is not incontinent so not really a bathroom problem. I'll ask Hospice about the bed pads for bed sores too. You are the best!!!
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Let her shriek about the cigarettes - NO MORE- You don't need your house burnt down. That is no fun.
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gdaughter Apr 6, 2019
Cold turkey withdrawal when she is dying and addicted? I don't know. But your point is valid and the health of inhaling that dreadful 2ndhand smoke...
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Maybe, Madam, I tis Time for MINL..TO GO TO HOSPICE.
Make those Arrangements ASAP!!!
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It would be worth exploring CBD oil. My mom recently passed and we were working to put her on it for her pain which was opposed by her hospice nurse due to her lack of understanding and her only push for morphine. This issue was going on after CBD oil was legalized in January in the state my mom was living in. Unfortunately, new laws take time for some hospice care takers to understand.
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sorryselma Apr 8, 2019
Thanks, knoxrad, we are exploring CBD. My daughter who is visiting right now thought it could help. The tricky part is finding the right formulation/ brand. It's legal in Cali. and pretty abundant. Just spoke to Hospice nurse and they are open to trying it. Could really help the pain from arthritis, I hear.
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I am smoker, trust me I'm not likely to be cruel to her about it.

But MIL goes into respite care without her cigarettes. You need that break. And the hospice providers need to see her in the early mornings and get what her pain is like and DO something about it.

Meanwhile, try a heat pad, an electric blanket or massage with warm hands first thing to loosen her up on waking. Be firm and confident and shut your ears to whatever verbal abuse she spits out because f you're tentative you'll get nowhere. And you could ask whether you should wake her an hour before her normal time and give her her Tramadol then. What a nightmare! I feel for you.
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sorryselma Apr 8, 2019
Thanks, Countrymouse. We have been doing heat wraps, patches, Tylenol, morphine syringes orally... and right now looking into getting her a hospital bed through insurance so that she can get out of bed more easily.

Out-of-the home respite care is out of the question for the moment - My husband wants to care for her at home in her diminished state, though he is open to bringing caregivers in for support. Given her temperament though, I'm pretty sure that she will put up resistance to strangers helping her, but I remain adamant in finally bringing in outside caregiver resources. I just can't humanly take care of her increasing needs.
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Selma,
You said your husband works away 50 hours a week? Ask him if he wants to “switch” roles with you, even 1-2 days a week. Unless I do not have all the facts, you should not be the primary Caregiver 24/7 who manages this very hard situation. It is time to set up some limits.
If you haven’t done so yet , sit with your husband and discuss the fact that you cannot continue like this for all the reasons you have shared with us. You are being beaten up and you will not last...
Yes she is on Hospice so this will end someday but caring on your part should include time away
for your own sanity.
Be good to yourself as you are with your MIL See a Counselor or a Psychotherapist to guide you navigate these tough daily challenges and the many emotions that are there.
Call the Council of Aging or Division of Aging in your area so they can give you guidance and help.
Wishing you good solutions soon, for her, your husband and for yourself. On this team, you are a patient too!
Many hugs 🤗
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sorryselma Apr 8, 2019
Thanks Godguidesme for the hugs, sweet wishes and excellent advice. Every time I mention to my hubby that this situation is way beyond my capacities, he shuts down and doesn't know what to do to help. He is sympathetic - he sees that I am exhausted and that we need to take some action, but we are unable to generate meaningful solutions together and end up feeling stuck.

Our lack of funds to place her in a hospice facility or nursing home plus the difficult language issues present hurdles to caregiving that always seem to involve us 100% alone doing the caregiving. My guess is that I must be sounding like a broken record to him and I am now putting him on overload too. He does a lot of the morning wake up routine now with morphine and her elevated pain. I am also someone who pushes through my own pain and health conditions, to take care of everyone else, but it's taking a big toll.

I think we need to bring caregivers into the home for added support, even if they don't speak French.

Sending hugs right back at you.
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Before bed, I'm sure she's getting pain beds? Have you tried meloxicam? You'll have to find a pain med that works through your doctor with trial & error. Try to get a 8 hr pain med. Give it to her before bed & wake her up at 7.5 hrs before it stops working to give her another, then again at lunch. Keep ahead of it. Also, anti anxiety, pain meds & many others cause dizziness. Just walk close to her. She has to have the meds. It's a lot of trial & error finding the right anti anxiety too. But find it. It's necessary for you, so you don't give up. It's necessary for her because she needs to feel better. The last thing I would recommend that that you find hearing aids that can stay in without being too uncomfortable & that still let her wars breathe so she doesn't get any ear problems. Maybe take them out only before bed until her next med time. You have to leave them in so she can hear how loud she is for your sanity :) good luck!
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If she’s on hospice, she can be IN hospice. Find a residential hospice program for her. You deserve a life.

Smoking, shrieking, they’ve dealt with everything you can think of.
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Ash1984 Apr 8, 2019
This is what I was thinking. My grandmother was in hospice and they were able to manage her pain and discomfort. I'm a little surprised that she has a hospice nurse coming in and still isn't receiving anything stronger than Tramadol. Maybe it works for some things, but not the level of pain you are describing. As far as the smoking goes, I got to know a man who was in the hospice at the same time as my grandmother and he smoked. They had a small enclosed outdoor area.
Best of luck and push hard with the hospice care people. Your MIL deserves adequate pain management and you deserve to have a less stressful life.
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It sounds like you are doing an exceptional job with MIL. My 85 year old Mother went through about a year of yelling out for her mother due to dementia. She was in a memory care/ AL. Many times that I went to visit she would hold up her arms and say "oh momma" and just cry. That just hurt my heart. I could handle just about anything else. I'd say "mom, you are my momma" and she would say she knew that. Dementia is so hard to deal with. My silver lining is that, she had severe arthritis also and was wheel chair bound. So I didn't need to worry about her falling...that is till she was in an AL that didn't go to her after 5 minutes of her yelling out " momma, please help me" upon awakening and she tried to get up many times and fell many times. First time she broke her collar bone. The RX's that seemed to help the most were hydrocodone for pain and Lorazepam for anxiety.
She passed away on Jan 23. I went to get her belongings on Jan 26 and slipped on the ice and fractured my hip socket...nonoperable and they gave me tramadol for pain. It did nothing for the pain! PLEASE talk to an elder care doctor that understands her needs. I know there are such ridiculous rules and regs they need to follow due to abusers of drugs. BUT THERE ARE SOME THAT NEED THEM. I wish you the best....I know it's a tough journey and different for everyone. Also, the nicotine patch may help. Taking smokes away would cause so much anxiety without something to help. Only you know how dangerous it might be in your home. Again, I wish you the best!
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sorryselma Apr 8, 2019
Thanks mamasdaughter for sharing your story. Take care of yourself too - I am so sorry that you got injured. Sending all my warmest healing thoughts. I agree that we have to look into other meds for MIL as Kelkel also mentioned. Bless you for your kind words!!!!
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The morphine is probably exacerbating the dementia.
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You have to do what is right in your situation but - my Mom is allergic to morphine and anything that is a derivative , Percocet, etc. Ditto Ativan or any sedative. Just took her off of asthma inhaler (Flovent) because of hallucinations, anxiety - coming off steroid also has symptoms. Could just be the heart failure. We'll see. Any drug can have side effects - go to their website. Dr's do not tell you this. Hospice prefers giving morphine - calms some people down but others makes them screaming lunatics. (Heart surgery 19 years ago went fine for Mom but she flipped out on Percocet - Ativan made her catatonic for 3 days and then she recovered) If she needs sedatives now I will put 24 caregiver with her - not me - I have my own family and myself to take care of. If necessary In patient hospice. Also, try hot water bottle for back pain - soothes with no side effects.
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Hospice should be providing something to calm her. She maybe hallucinating from the morphine it happens. In the kit they give you to put in fridge, there usually is haldol. We asked to use it for my dad that cried out constantly. It helped calm him and quiet him. Also ask to increase the morphine and give more frequently. It can be given at two hour intervals. Also they should be providing a narcotic break through pain med like Norco/hydrocodone. We crushed this and have to my dad. Crushing it helps it work faster. Hospice is supposed to alleviate this problem. If the patient is like this, they are to take care of it. They also are there for the care giver to help you too. They provide volunteers to sit with the patient so you can leave for a few hours. They also provide respite for you. This means placing her in a nursing home for one to two weeks at a time to give you a break. If they're not doing any of this, please call their main office. Hospice goal is usually to keep the patient in home. Therefore they provide you help as I've stated above.
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sorryselma Apr 8, 2019
Thanks Liz1963. These are great ideas. MIL is a fall risk so they are conservative in what they are prescribing her. I am also researching a CBD oil that has no psychoactive ingredients; I have read that it can do wonders for arthritic pain.
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Morphine. She needs morphine. Current pain control is not controlling her pain. She is dying. Let her die in as much peace as can be given to her by insisting that morphine be tried with her because she screams in pain.

Video her when she wakes up and show the hospice nurse. Better yet, schedule the hospice nurse for first thing in the morning so that s/he can see.

Not every person reacts to every pain medication the same way. That is a bad assumption that too many doctors make. Some people do very well taking just a Tylenol for pain while others need morphine.

Pain control is along a spectrum; it is far from black and white.

Is this hospice the only one available?

According to the Hospice Patient Alliance:
"All licensed hospices must meet the federal regulations governing participation in the Medicare program, even if the hospice is being reimbursed by a private insurance company or other source of payment ... the regulations are the same. The Centers for Medicare Services (CMS) requires all licensed hospices to meet the federal standards set forth in the Code of Federal Regulations: 42 CFR ch. iv part 418.
If you have problems, speaking with the Hospice RN casemanager is the first step, then speak with the hospice's Medical Director and the Manager.
You have a legal right to speak with these hospice staff.
Do not allow yourself to be dissuaded from speaking with them if you have a problem which the RN casemanager cannot resolve.
Reporting Problems by Filing A Complaint
If clearly communicating with the hospice RN case manager, director, medical director or other staff does not quickly resolve the problem, then there are several ways to handle the situation.
Delays more than a few days are not acceptable, because your loved one has only so much time left.

***In situations where your loved one is in severe pain and proper pain medication is not being administered, then delays of even a few hours are not acceptable. If you have clearly communicated with the RN case manager, the hospice director and/or medical director and your loved one has not received the care that is needed for his or her terminal symptoms, then in these types of situations the situation needs to be corrected as soon as possible. A complaint to the following agencies is appropriate when problems remain unresolved.
file a complaint with the State licensing division which inspects the hospice,
file a complaint with the Joint Commision on Accreditation of Healthcare Organizations ("The Joint Commission" for short) if the hospice is The Joint Commission accredited
Each of the above agencies can and will inspect a hospice as a result of receiving a complaint in writing.
However, filing a complaint alone will not bring action by the hospice, and inspectors may take weeks or months to respond!
You will need to let the hospice agency know what your intentions are and that if care is not improved a complaint will be filed.
This will often motivate them to arrange for care to be provided in a more timely fashion."
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sorryselma Apr 8, 2019
HI NYDaughterInLaw,
Not thinking we need to file a complaint just yet, this Hospice has the best reputation in town and the doc on the case is a gem. He specializes in Palliative care. I think that the language difficulties puts a lot of the burden on us, much more than ordinary folks in getting services that could help - we need to be more assertive about their role in controlling her pain and preserving our sanity and own health. Given MIL's anxious temperament and proclivity for drama with her frequent yelling in other contexts, it's hard to get an accurate reading of the pain. I know she's hurting and Hospice is working with us to bring down her pain, but I do agree with you that it would be nice if they were a bit more proactive. I love the idea of video in the am when she just wakes up. Thanks - this post helps a lot in terms of expectations of the Hospice team.
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Unless there is a reason you are not disclosing, why is she not in a 24 hour nursing facility? She is 90 years old and in bad shape. Like another person commented, she needs morphine or whatever does the trick for her pain. Many nursing homes will start out taking the patient outside for a smoke for a few weeks to gradually take them off of the cigs but morphine would keep her from wanting them too. Mom screamed out for my Dad at 2:00 am just to talk! Poor Dad was not in good health either but we all tried to keep her home until it got like you described. They will take you down with them. Would your husband be open to the nursing home option? Hospice goes there to administer morphine and give a 2nd layer of comfort and care.
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PandabearAUS Apr 8, 2019
Perhaps she has no health benefits as she may have been brought from France at sons cost and as such family must pay all costs
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Selma,

Just thinking of you...
No easy answer. I do want to offer support though and offer a giant hug! I wish I had an answer that would be suitable.
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I know this has been posted already, but first thing - take those cigarettes away! She’s already screaming, so she little more is not noticeable. What happens when she burns down the house?
Second..she belongs in a true hospice with heavier medication. You are a saint to keep trying to help, but don’t do it at the expense of your health. Sending a hug to you.
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Selma; I'm sorry if this is a rude observation, but your DH will not allow MIL to get facility care. Instead, he insists that YOU do the caregiving. And MIL is allowed to dictate that there be no help.

I'm not sure I understand what part of " this is YOUR mother, you need to either DO her caregiving or arrange for caregiving, or arrange for ME to be paid for her caregiving" he doesn't get.

No one person can care for an elderly person alone. NO ONE.
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LoopyLoo Apr 8, 2019
I know of wives in similar situations... it's their husband's mother, but the husband figures the wife can/will do most of the caretaking. Maybe because they see it as "women's work"-- an extension of motherhood. Or since they feel weird about the dressing and toileting, it's the wife's job.

I'd hope times are changing.
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