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.
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!!!
Keep it simple.
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.
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.
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!
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!
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.
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?
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.
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.
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.
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.
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!!!