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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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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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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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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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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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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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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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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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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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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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