How to handle a major screamer and not have my nerves completely frayed?
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.
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!!!
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.
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.
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.
Plus like cwille said, no one should endure that kind of pain while on hospice.
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.
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.
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?
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.
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.
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!
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!
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
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.
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.
Keep it simple.
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!!!
Make those Arrangements ASAP!!!
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.
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.
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 🤗
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.
Smoking, shrieking, they’ve dealt with everything you can think of.
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.
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!
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."
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.
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.
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.
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.
I'd hope times are changing.