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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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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 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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sorryselma: Thank you for that explanation. Good luck.
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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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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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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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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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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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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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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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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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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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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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