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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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Pardon my callousness (but I've become that way, caring for both parents with varying degrees of dementia). My Dad reverts to yelling when upset (most of the time, now!) and he can summon up an impressive volume. Just activates that fight or flight response - hammering heart, shaking legs etc - in the recipient (me) - so I understand what you're going through. Have you thought of earplugs? The soft foam ones that still allow sound through, but muffle the edges/volume...? Might be worth considering? Also for the falls risk (which was my Mum, but she's since become immobile) have you seen this.... https://www.mylifeglider.com/.. ? Something I'd have considered, if I'd found it at the right time.
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Hi again- re: Hearing aids. My mom had some and lost them. They were replaced and she almost instantly lost them. Being so tiny and the house very cluttered, I was not up to the task of tearing the whole house apart - because at that point she could have put them anywhere, not necessarily a place that made normal sense, like the time I found the phone in the freezer and the remote control in the linen closet - I would have had to look EVERYWHERE! The usual hearing aids are not very good with dementia because of the above issues and difficulty remembering and managing teeny tiny controls and battery changes and feedback, etc. I would recommend the ones called "Lyric". They are so different from the usual hearing aids I wish they wouldn't call them hearing aids so people who have tried hearing aids and hate them or can't manage them would be willing to try them. These go in real close to the ear drum, so they are inserted by the hearing professional and they stay in for 3 months and are taken out and replaced by the hearing professional (no chance to lose them!). Because they are so close to the ear drum, they provide a very natural sound and don't get any feedback whistles, and they don't need to be adjusted for different environments and they don't amplify annoying background noises. I tried them with my mom probably more than 10 years ago, but at that time they were so new they weren't making them in different sizes yet and the ones they tried didn't fit right for her. I'm pretty sure they have improved them since then. At that time they were very expensive, maybe the price has come down since then. Perhaps there is some way to get funding for them now, like places online where people contribute to help people with medical needs, maybe the audiologist could make recommendations. OOOHH! I just took a moment to see if I could find resources on line and, voila! typing in "assistance to pay for hearing aids" brought up a ton of sites, some only for local areas, children, US residents, etc., but there were quite a few without those restrictions. There were also charitable organizations like Lions Clubs, etc. and lists like ways to get help with medical expenses, lists of ways to get help to pay for caregiving, etc. Included was reference to what looks like a great funding source: peoplepledge.org that has no restrictions or bureaucratic requirements, where you post your situation and others can contribute to your financial needs for medical/caregiving expenses. I'm willing to bet there would be a lot of people who would be sympathetic to your situation and want to help you financially. I hope you can find something that would really be of help to you.

Best wishes and God bless!
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sorryselma Apr 11, 2019
Well, thank you once again for your never shortage of excellent ideas, my bestie Kabeeena!!!! I love reading your posts! I had never heard of "Lyric" and will definitely check it out. I'll also look at the funding source, I have been a bit suspect of GoFundMe and others, but I will take a look at peoplepledge.org. I am talking to the Hospice social worker tomorrow; she is helping us apply for a grant for 48 hours of free caregiving. And I told DH tonight that we can not do this caring for his mom alone anymore, that most would find it untenable. You should write a book or create a website with these gems. Thanks, K - all my warmest wishes and appreciation to all the thought and love you put in your posts.
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hospital bed with rails. automatic bed pad. My aunt forgot to use her walker, fell, and that was that. She can't use her walker anymore, demential I suppose is why she forgot.

morning screaming pain, may be caused by stiffness in the bones and joints. Hot pads or salonpas patches might help. Solonpas patches are reasonably priced.

and Goodnight. Hope things get better for you and family.
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Me again.... I keep thinking about you and your situation and more ideas pop into my head. My mom was completely unbearable (I describe how she was as "hell on wheels") for a couple years. We tried a number of dementia meds that made miniscule difference. As it is, there is a door jam that shattered on the Nth time I slammed it as hard as I could between each word while saying, "You...
Are....driving....me....crazy....Do...you....know....you....have....been....pounding....on....and... kicking.... the....doors....for....eight... .hours....straight!....I....can't....take....it.... any....longer!" At that point it shattered, and I thought I'd better stop slamming it. She looked shocked and said, "I have been?" That's when I began to ask God to give me patience beyond what I had in my naturally patient personality, and I also complained to her doctor about how difficult things were and is there any other medication we can PLEASE try? He reluctantly mentioned Risperidone. Reluctantly because there was a "black box warning" that there was a small percentage of patients in a study that died 7 months earlier than those that didn't take it. And then he said, but if they're miserable and making everyone else miserable, maybe a slight chance of dying a few months earlier than they would without it, but the time that they lived was more pleasant and your life was more bearable, maybe it's a risk worth taking. I decided it was, and it made a significant improvement in her moods and it helped her sleep better as well. That was probably 5 or more years ago, I don't know for sure, it's all a blur, she's still with me, and I don't want to think what would have happened if we had continued the way things were. I'm pretty sure it would not have been pretty!
Better living through chemistry!, (and with God's help) as they say...
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I know many people will most likely get mad at me for saying what I must say. First of all, I don't care if it is God or the Devil or anyone in between, family, spouse, whatever, the minute someone's behavior goes off and "over the bridge", not a soul on this earth should be forced to put up with bad behavior and abuse and fits of rage and all the other stuff - no one, not ever. Oh, I know there are people out there who can remain unruffled and be wonderful care takers but not everyone is made like that. Your first and foremost responsibility is to YOURSELF. Her behavior, and I care not why, is horrible and cannot be tolerated under any circumstances. Somehow, and you will need to search help from people in the community who are trained to help the elderly people, like the local Office on Aging in your county or social workers in hospitals or eldercare attorneys. It takes time and effort but it is out there and you just have to look. You cannot allow this woman to remain in your home and make you take care of her and your husband has to face that fact. You can't wait - you need to do this now and you may need to find a neurologist or a doctor who can help you. Now, I have lived a most difficult, hard life and far too late, I made up my mind not a soul on this earth would ever abuse or mistreat me again or yell at me - I'll fight to the death to protect myself (I didn't do this in my earlier life - but now I do as a matter of survival and I am much happier in my life now). If she acts out and screams, don't be "nice, nice" to her - it won't stop her. Stand your ground and let her have it with both barrels. Shock her and perhaps frighten her that she either stop it at once - or else. She will understand by your stance and your attitude and it may get through to her - but you must get her out of your home because if you don't, you will be joining her in the nut house. You do NOT deserve that - NO ONE DOES!
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sorryselma Apr 11, 2019
Hey Riley2166,
Your post really struck a chord with me. I think it's the curse of being too nice. You're right, I feel like I have been robbed of so much - my freedom, a calm home, my peace of mind, pursuing outside dreams. Having MIL living with us has put cracks in what had always been a strong relationship with my spouse, She has taken priority over my needs. I am so glad that you have learned (maybe the hard way from what you say) to protect yourself. I don't think that I have much of a choice in the matter of her living with us - I would have to physically leave this situation. My husband would not be willing put her in a nursing home or AL facility, even if we had the financial resources. Because of her immigration status, and inability to travel back to France (plus DH is only child), we are truly stuck. I know that I don't deserve this - but options in our case are very limited. I have learned to find ways to express my displeasure with certain behaviors like the yelling, but with dementia it's not always easy to set boundaries. Your insights will help guide me though to be tough when I need to be and stand up for myself, and I will reread this post during these times. Thanks - sending hugs to you.
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I second the motion made by Kabeeena regarding the therapeutic fibs... It is not about lying so much as bending the truth just to reassure and calm the person with dementia. Their reality is not ours, but we have to transition to see things from their point of view. Rather than dispute anything she claims, such as someone came in and took stuff, reassurance that it is likely here, maybe say YOU displaced it, give me a minute to find where you left it. Basically it comes down to agreeing with their viewpoint as much as possible and not trying to correct them, as that can be counterproductive. This also might work for getting her off the cigarettes - take them away and if/when she asks for it you can try saying you just had one, or you stopped those years ago... using a patch might help with the withdrawal as well. Sometimes out of sight can mean out of mind too.

From additional posts, it sounds like perhaps the screaming/pain issue might be better, with medication. Although it is also considered a fall risk, a very minimal dose of Lorazepam can be used to calm a person. Mom's is Rxed as needed as it isn't always needed and it doesn't take time to "build up" in the system. Within 20-30 min of a dose, she calms down (occasional sun-downing episodes and UTIs is when we need it!) Certainly continue to seek out alternative ways to get respite for yourself in the meantime!

You mentioned hearing loss ("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.") Our mom also has serious hearing loss. One ear is pretty much shot, the other not much better, but she now forgets to put it in (sometimes I have to search for it in her room at the facility), other times the battery isn't replaced, so it isn't working until I put one in during a visit.

What I did was buy an item called a boogie board on Amazon. It is an LCD screen that you can "write" on with a stylus (anything pointy, even a fingernail will work, but DO NOT use a pen or pencil) and it can be cleared with a button. This helps me and the staff communicate anything she isn't understanding as she can still read and understand what we're saying/asking. There are multiple offerings, different sizes, etc. I bought additional 3-pack of stylus, knowing that they might likely get misplaced! The battery cannot be replaced, but it should work for a long time - for a pittance I also got the insurance so that if something failed on it they would fix or replace it. She actually did use a marker type item on it, but eventually the ghost of what was written has worn off!

Good luck with the job hunting! Although any job to get you out might be preferable, sometimes places like walmart won't hire someone with advanced degrees, thinking they aren't likely to stay! Never hurts to try though - as noted, getting out, seeing other walls/people and being able to carry on somewhat normal conversations with others is beneficial!!
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Hi, it's me again with another thought... Volunteers that don't speak French might be able to come to help YOU - with light housekeeping, running errands, etc. Every little thing that lightens some of your load can make a huge difference. A student from France or Canada might be eager for opportunities to practice conversing in English in exchange for helping you. This would even help ease the loneliness and isolation you must be feeling. Again, maybe none of this fits your situation, but if not, it might spark other ideas that do.
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SorrySelma- Some more thoughts...
I got highly dependent on "therapeutic fibbing" because it's like trying to reason with a 2 or 3 year old child, the ability to reason just isn't there anymore, so you get more cooperation and compliance if you get creative and make up reasons they are more likely to accept. Some examples: My mom was obsessed with wanting to "go home to her parents" who had died 30 years ago. I tried telling her they had died, but the grief she experienced just broke my heart. I tried just saying I had work to do and couldn't take her, but that got me nowhere. I finally came up with telling her that her parents were away on a long trip to Mexico, (something they actually used to do, so it made sense to her) and everything in their house was turned off so it would be dark and cold, no water no electricity, etc., so we would have to wait until they came home, and I just told her that every time she asked to go home. We put locks put on the door that we had to unlock even to go outside to prevent her from escaping, and when she tried to go out and couldn't open the door and asked me to help her open it I pretended to try it and gosh, it must be broken and I couldn't get it open either.

The idea of telling MIL that the nurses/caregivers are your friends just visiting is good. If the nurse has to wear scrubs, tell MIL that your friend is a nurse and just stopped by to visit you on the way home from work at the hospital. Initially, have them hang out with you and chat with you and her , while you do your usual caregiving activities, and gradually have them "just help you out", say, "hey, while you're here, can you take moms temperature, (or, whatever nursing activities they came to do) 'cause I'm not very good at it" or, "Hey, can you help me help mom get out of bed?" etc. while you remain the main caregiver. Every time they come have them take over more of the activities as MIL gets more familiar and hopefully more trusting of them. Eventually you could say, "I have to go to the store, can my friend wait here with you while I'm gone?", etc.

re smoking... My dad refused to even try quitting, but when he went to the nursing home, we didn't mention the cigarettes and didn't bring them with him, and he never even asked about them!. You could try that - Don't make an issue out of it for her to get upset about, just don't provide them, and if she does raise the issue, just tell her "Oh, gosh, I forgot to get them, but if you're feeling bad, we have this patch here that will help you until I can bring you some" and then just keep "forgetting" to bring them to her.

re fall risk... I strongly recommend the hospital bed, and make sure it has railings so she can't get out of bed until YOU come help her out, or there are alarms you can install on the bed that alert you she is getting up. This gives you the control of when and how she gets out of bed ( put "bumpers" or pillows or rolled up blankets against the railings so she won't get her feet tangled up in them). Also, get a walker and make sure she uses it even as a way to help her stand up out of bed. You could tell her that she only needs to use it "until she gets used to the new medication" and just keep telling her that. I think hospice provides physical therapy to evaluate her and advise on which devices to use and to train you and her how to use them safely. If these kinds of things were in place, and you had more control over her movements, hospice might be more willing to give the meds she needs for the pain and anxiety. I know these things can be expensive, but you can often find them free or really cheap on Craigslist or at a Goodwill store or thrift store in your area.

I hope some of these ideas fit your situation, or, if they don't, maybe they will spark other ideas that will help solve some of your difficulties.
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sorryselma Apr 10, 2019
Hey Kabeeena,
Your ideas are brilliant. Thank you so much!!!!! I love your idea of therapeutic lying - I have to work on bending the truth to get MIL on board with changes around her more readily, she puts up so much resistance for everything and will ask a flurry of questions - I tend to make things too complex for her. Your posts definitely add a spark of creativity to caregiving solutions - you rock!!!!
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Ask the nurse about extended relief morphine or other er pain drug so pain will be less in am. They may be hesitating to give a stronger med because for some hospice patients it can be fatal and could amount to assisted suicide. They can offer comfort but must let death happen naturally.
Library or schools may have French books on tape she could listen to or you could go online and get shows, podcasts, news, etc in French that may entertain her & help relieve some of her anxiety, boredom , loneliness & homesickness,
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rovana Apr 15, 2019
Great idea!  Books, tapes, films, etc. in French.  So obvious when you think about it!
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It is hard to hear the anguish of another & be unable to sooth their pain, be it physical or emotional. When my daughter was a baby I wore headphones with loud classical music to help me stay calm when she was colicky. It was such a blessing I gave my sisters each a Walkman when they had their 1st child. You need to be available, but you can tune out & check in. Play music for her, too, it’s very therapeutic
As far as meds not all anxiety meds are sedating. Ask about Buspar or an antidepressant. Too many dr.s think of Clonopin or Valium for anxiety but milder drugs can be tried. Best of luck!
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sorryselma: Thank you for that explanation. Good luck.
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I thought all hospice care was the same, was not that happy with the one we had a few years ago and was told by a nurse to try out another company because they can vary widely. Maybe you can ask around - talk to some of the organizations mentioned in these answers you have received, ask for recommendations for good hospice care companies, also research online, then talk to the hospice companies that get the best reviews and ask about how they would handle the situations you are dealing with, and go from there.

Best wishes and God bless you!
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Something must change because this dynamic is not working. Mom in law will have to quit the nicotine addiction (easier said than done), but she is going to cause you to become VERY unwell -even moreso than you already are. Then she will have to apply for Medicaid or be housed elsewhere. Your health comes first.
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sorryselma Apr 8, 2019
Hi Llamalover47,

MIL does not qualify for Medicare or Medicaid because of her immigration status and the small pension she continues to get from France for her past work as a schoolteacher. She also moved to the States with minimal savings, not enough to cover even one month in a facility. We signed a statement of financial responsibility to allow her to immigrate here; the economics of putting her in a nursing home could push us to the brink of financial disaster and put our own retirement in jeopardy.

I agree it's an untenable situation and that's probably why I post here so frequently. This forum really does help to keep my sanity intact. And I don't know when the end is in sight. MIL has defied the doctor's expectations for longevity - being 90, still smoking with congestive heart failure and in need of aortic heart valve replacement. We can try a nicotine patch but when you have been smoking for 70 years and are stubborn to the max, it may not work. She is very agitated without her cigarettes.

I think getting a live-in caregiver at our home, one who speaks French, may be our best option.
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I'm getting a headache just reading your post. I could not be more sympathetic! Temporary solutions. Noise cancelling headphones. While looking for work, get a job--any job, to get away from this. Seriously, I would rather have an $8hr annoying Walmart job then listen to that. I was hoping that we would be beyond the "woman has to do stuff for free because she is a woman" nonsense, but I guess that's for the 22nd century.
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sorryselma Apr 8, 2019
Hi Toadhall,

Thanks for these ideas. Despite a PhD. that I killed myself for, I would be so delighted to work at the local Walmart compared to staying at home. I do not consider myself a natural born caregiver, can't deal well with the constant repetition of questions that is typical of dementia patients or difficult behavior. But I am kind. My husband is pretty cool and would much rather that I work because he knows I would be happier working. Because of being in my caregiving situation for so long, my energy to search for jobs is diminished and I feel so haggard that I may not present as well when I do get interviews. My friends tell me that I look unwell. Plus there is also some ageism out there - I am 58.
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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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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,

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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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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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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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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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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The morphine is probably exacerbating the dementia.
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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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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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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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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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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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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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Maybe, Madam, I tis Time for MINL..TO GO TO HOSPICE.
Make those Arrangements ASAP!!!
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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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