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 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.
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.
Best wishes and God bless you!
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!
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,
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.
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!!!!
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!!
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.
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...
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.
Best wishes and God bless!