Very frustrated....what to do about my Mother-in-Law.

You are so right frustrated2-one word or nod from a nurse can set chaos in motion-like Epileptic fit-he's having a fit-sounds terrible-por demented soul-sounds terrible. I have heard of people being in shock actually being beaten and killed by police who mistook their behavior for being on drugs. Or demented. Or both. Are we losing our compassion? Words like lunatic-fit, demented can and should be replaced with compassionate verbage-At the hour of my dads death the nurse said he was all but a vegetable! I said what kind? A carrot? Lettuce? What? She got my drift believe me. And when his doctors had him on Pavulon-a powerful paralyzer they said he felt nothing an thought nothing-well I was reading him a book and said I have to stop now and leave you for a bit I saw a tear roll down his cheek.
and when they were drawing blood and missed his vein and started a new I.V. he cried again-no movement just tears running out of the corners of his eyes past the vaseline they had on the eyeball itself. He only did this if I said I was leaving or if he was getting a stick. I have a friend who had a son on this drug for 36 hours and she read to him. After the antedote to wake him up he told her what she read him and what was said-he said it was a nitghtmarish experience not to be able to move or see but your mind is working and because no one told him he thought he was in some hellish nightmare. I will add your son to my prayer list. Such a tragic story and your mils poor brother! How horrible can that be and God knows how many other souls suffered these atrocities. Oh my Lord! How tragic.

My son was diagnosed with type 1 diabetes ten years ago, when he was 32. He has had, as a result, several severely low hypoglycemic incidents. These resulted in visits to the ER where he didn't know who he was or who should be contacted - basically didn't know who I was either - until his blood sugars raised. An ER doctor misdiagnosed him once early on with epilepsy. It clearly was diabetes related, but he had to go on anti epilepsy drugs and see a neurologist for a year. This caused him to not even be able to drive. AND still, not epilepsy. When I told my elderly mother in law about the misdiagnosis, she told me - shockingly! - that she actually had a brother who was COMMITTED to a mental institution, had a lobotomy and died at a young age because he was epileptic! Also, as an aside, her other son, my husband's brother, is also a type 1 diabetic and even though he was diagnosed t 14 she never made any connection to what might have happened here during an ER visit! Even she thinks epileptics are 'suspicious' folks who should be removed from the general public!
So many misconceptions and prejudices are borne out of ignorance. Often people don't mean ill but they sure sound terrible. I think we need to just go back to the basics of being kind and non judgemental.

Your description of what happened during this visit so vividly illustrates how little 'we' see - truly see - someone in their misery. Moaning is a visceral response to something that hurts or is in need of fixing. When someone is 'out of it' it seems they are completely negated because they cannot lodge a complaint. They just become an organism OF pain. Their existence IS pain. Thank God you were there. God bless your for championing this person. So sad.

Furthermore I just got back from visiting a dear friend who isa in Hospice and he was moaning. I overheard a woman who was visiting someone in the next room ask an attendant why my friend was moaning-Oh, he is demented, came the answer. I gently pinched the skin on the back of his hand and it stayed pinched so I looked at his tongue and it was cracked and dry-no-he was not demented-he was thirsty. He has a hard time swallowing liqwuids so they thicken his water with powdered pineapple- I asked for a cup and a straw and the attendant said no-he has to have powder mixed with his water so he can swallow it. I phoned his wife and she phoned the doctor who said nonsense-give him a glass of water and put a quarter cup of pedialite liquid with it. He drank the entire cup and said thank God! My tongue was stuck to the roof of my mouth. Now as far ads I am concerned the action of the attendant was demented. I tasted what they were giving him and it was horrible!
His doctor came about 20 minutes later and ordered an I.V. drip-he was severely dehydrated. I have a mother in law I've always thought was demented but thats a whole different story.. Look up the definition of demented and see if you would ever want to be labeled as demented. People understand Alozheimers-brain damaged, having a senior moment or even senility-dementet is a nasty word in my opinion which counts for not alot. I remember when spastic and retard was common also. To me Demented sounds criminal. At best a slur often used in jest by children. Dementia is a medical term and diagnosis-why use it to describe an in law or a family member when there are kinder words to describe a horrific condition? I think it is like pouring salt in the wounds. But thats just my spin on it.

You are correct jeannegibbs there "Shouldn't" be anything negative about the word demented anymore than the word retarded or the word spastic-shortened from involuntary spacity of the muscles but unfortunately demented implies to insane or crazy-and it is often used to describe criminal acts. You seem to challenge me on just about everything I post. Bundy was said to be demented. Manson and his clan were said to be demented. Like you said you call your charge Demented if you want and I will humanize mine and use a kinder, gentler word.

Menohardy - I have diabetes. I am diabetic. My husband has Lewy Body Dementia. He is demented. There is no shame and should be no stigma in any of those statements. They just report a medical fact. We are both also elderly but that is not at all related to the other statements. I think it is high time -- and beyond time -- to simply be matter-of-fact about a chronic condition that impacts huge numbers of people. We don't try to dream up euphemisms to describe copd or Parkinson's or MS or diabetes. Why can't we say dementia, right out loud, when that is appropriate? It is just a medical reality. It is not a judgment on the person who has it. Being demented is not a character flaw or a shameful secret.

So, you call your charges seniors and I'll call my husband (if the situation calls for calling him anything) demented. And both of us can print out the menu and study it at home to save time and stress in the restaurant. Your slogan of "simplify, simplify, simplify" is a very useful one!

I don't know whether it has any application to the original poster's challenge of a MIL who won't make necessary decisions about her living situation, but it is certainly worth considering.

Menohardy - Your comments on slowing down and making accomodations to the process of choosing between things are very helpful. One thing you say that I don't agree with, though, is exchanging the word "demented" with something like elderly or senior. It is tough to know how to describe various conditions and afflictions sometimes, and while I agree that senior or elderly are fine for indicating someone who is older, dementia is another thing altogether. Thank God everyone who is senior or elderly is not demented. And not everyone who has dementia is senior or elderly. I prefer to use specific words as much as possible, and I tell people, when appropriate, that my MIL has dementia due to Alzheimer's, although I do not say it within her range of hearing. I'm nut sure whether she would even know what I was saying, but I prefer not to do it. I have read about people who have made up cards that say something like that to hand out at restaurants or other places where people may not understand what is causing someone's behavior issues, inability to make a decision, perhaps making some sort of scene, and so forth. I haven't gone that far myself, but then we rarely go out anymore where there will be a crowd or long wait involved (long being anything more than 5 minutes these days). About the only place where we do gp that involves much of a wait is her doctor's office, and they all know what to do there. They get us into an exam room ASAP, and then rout the doctor in as quickly as possible, too. I take cookies along to keep her occupied in the exam room until the doctor comes. I arrange grocery trips and other errands for the hours when the respite caregiver is here. We get carryout or drive through on the rare occasion when we get food out. It's just not fair to her to put her in situations that are going to stress her out, so we do as much as possible to minimize this, and it's been working out much better.

catjohn22/jeangibbs-One of the things I am learning in my introduction to professional care giving is to simplify, simplify, simplify. If you take your charge to a restaurant phone ahead and download the menu- beforehand-- and know what everyone wants in advance . I find it difficult myself when there are alot of choices. It is stressful to most of us who gets the waiter who just wants you in and out and keeps asking if you are ready to order. A 92 year old can hardly keep up with modernization and a society that seems to be in such a hurry to get no where fast enough.. Maybe we need to take lessons from them to slow down and live longer. Chain restaurants like Olive-Gar63n or taco bel9 really are serving one or two items put together in 20 different ways-Beans and Rice or Rice and Beans soft tacos or hard. treat the person you are caring for. They may prefer quality over variety. Remember, they usually have no need for speed. If they are rushed they get confused and quite frankly so do I. I am learning patience is indeed a virtue. Really hate the word demented. We don't call the mentally challenged retarded anymore. Actually my family called them slow which I don't like either. Elderly is a good word-Senior is better. I will tell a waitress hold your taters we will let you know when we are ready to order; we have a senior who doesn't like to be rushed but since you are here please bring us some more rols, crackers, bread, a double skotch-LOL-shes our designated driver and over 21. and by the way she tips very well! It breaks the mood into a fun, calm one. I especially like it when they(the waiters)ask her how old she is. That usually gets her a slice of carrot cake or some kind of treat. Honestly though this is what my text book tells me what to do. I did practice some things caring for dad but if I get an older patient I intend to do as the book says and make light of the situation; always on the elderlys behalf-hugs to everyone-LeAnne-hi...

Wow! Catjohn22 makes a great point. One aspect of dementia, even mild dementia, can be the inability to make choices. Northdairy, look at your situation in that light, and see if it fits. Maybe MIL really doesn't know what to do because that part of her brain just isn't working!

My husband still loves to eat out. Often he can handle selecting something from a small section of a menu -- I show him the 5 pasta dishes. (The entire menu overwhelms him. That is never a good option.) If he is having a bad day that is too much, and I'll just say, "Oh look, they still have have that cajun chicken penne you like so well! That's what we'll get tonight," and I remove the menu.

Truly, sometimes even simple choice are highly stressful for people with dementia.

(I am fortunate in that my husband simply trusts my judgment and is relieved when I take over if I sense he is having difficulty. I know that not every one has that kind of relationship with their impaired loved ones.)

My mother-in-law was also living in her house. but with her husband, at 89 years of age. They had been managing reasonably well, on their own, but then, suddenly, everything began falling apart. My FIL had a bad fall that led to neurosurgery, wheelchair confinement, rehab and then to assisted living, as their house was not wheelchair accessible. He also needed a lot more help, physically, than he had before, It was at that point that we realized how serious my MIL's cognitive decline had been. We had known for a few years before that that she was becoming increasingly forgetful, but both of them were very independent and proud, and neither of them ever mentioned the word Alzheimer's to us. In retrospect, I realize that we should have suspected more. We had become increasingly involved in their lives helping with things, but it's like watching your children's development; from day to day; the increments are so slight that you don't always realize how different they are at the end of a year from where they had been at the beginning. Before his own physical decline, my FIL had been compensating for his wife tremendously. As it turned out, we quickly learned that she could not be left by herself. I stayed with her every night for the month that her husband was in the hospital and rehab, and took her to adult day care during the days when my husband and I had to be at work. Even before the end of that month, we knew that they would both need to move into AL together. My husband and I found a facility in the city where we live, orchestrated the move, and went out regularly to visit, usually eating dinner with them in the communal diningroom once a week. From the beginning, my MIL could not even decide between the two meal choices given her. Her husband had always done all their paperwork, and overseen all the "business" of their lives. She could not have known what needed to be done, much less who to call and how to go abot it, and the stress of the move and changes, especially when my FIL died seven months later exacerbated the progress of her dementia. The moral of my story is that I don't think we should necessarily assume that our family members are being manipulative or deliberately difficult, or that they are capable of doing more for themselves. They truly may not be, but we just haven't realized their level of need. Fortunately (or not) my husband only has one sibling, who has lived outside the country for several years, and who seems to be perfectly happy with us coordinating what has needed to be done here. This has made some things easier, but at the same time, left all the work up to us. We have since moved my MIL out of AL and back into her house, as she is still ambulatory. She is now 92, and in basically stable health, physically. Her cognition though is etremely poor, and she hasn't driven in about eight years or more, so all her "activities of daily living" and everything else must be done for her, as she has become incontinent within the past six months. I have been staying with her around the clock for the past sixteen months. We are hoping that we can continue this arrangement through the end, but it is becoming increasingly difficult for us in many ways. We take it day by day, and now have a respite caregiver who comes in for 10 hours a week. Along with a good physician, an elder law attorney and your local Area Agency on Aging can be of help in making decisions about how to manage.

I had the same thing here, but no matter how we talked to her about her living conditions, financial probles, she would just say she did not know what to do anymore. She was not eating meals, house was a wreck, she refused to bathe, etc. I took her to her dr and explained what was going on.....he talked to her very firmly and said it was time she went into Assisted Living...she was not happy about it, but we moved her the 23rd of Dec. (She spend 24th and 25th with us)....she has no memorory of moving there (she does have dementia, parkinsons and diabetes. She was quite mad at me (daughter in law), but when I explained that she needed help with food, medicines (which we found she was taking when she wanted and how ever she wanted); and that we felt better knowing she was safe. She still complains and fusses, but we just ignore it. She is use to getting her way, very demanding...she has run all the family off except us. I thank her Dr every time I see him for helping us get her into a safe place where we know she is being taken care of. Good luck on your journey...sometimes you just have to step in and make the decisions for them. Do you have power of attourney? Another thing you may want to check into

Consider what could happen if something happened to you or your husband. I watched several elderly wives care for elderly husbands until it killed them--and the husbands went off to nursing homes and assisted living asap. Perhaps MIL will plan to prevent that outcome. You will be friends and advocates for her in her 'retirement home'.

"You DO have choices but you are choosing do to nothing" is a great mantra. Take a deep breath and repeat often!

Continue trying to influence MIL to make decisions and then help her implement them. But know that you can't control her, but you can control your own actions. I am very glad to hear that you have set some boundaries. It sounds like you may have to tighten those boundaries and perhaps set some more. Certainly you are willing to help, but you also need to avoid enabling her to go on indefinitely not making decisions. If you do "everything" for her, why should she have to decide? That becomes her decision ... just stay with status quo and expect son and daughter-in-law to do everything. Of course she knows your guilt bottons ... she helped install them after all! But you need to disconnect those buttons and make your own decisions on a more rational basis.

But you know all this, don't you? If you are looking for support and permission to set tighter boundaries, you have mine!

I would start with her Primary care physician if she has one. If she doesn't she needs one. He can order in the gentlest of ways a trained nurse to visit with your mother in law and access her situation then he or she makes recommendations to the Primary Care Physician. Your mother in law may qualify for in home care and you may even get compensation for helping her if she qualifies. That depends on her financial situation. The main objective is MIL health, quality of life and protection of her assets. If she has little income she could qualify for 50 hours of in home care per week paid for by Medicare. The last thing the Government wants is to place someone in a nursing home or hospice if the family can do it they will pay them but in order to qualify they must need a minimum of 50 hours a week. If Medicaid is involved under 50 hours a week that is not a good deal if she has a home and a car above a certain amount-she would or could have these taken away by the state after her death along with any savings. But if she has alot of savings she wouldn't qualify anyway. I would start ourt with the Primary Care Physician. Also under Medicare she qualifies for many things such as seated showers, wheel chairs(electric), alarm systems, life-line. Again it all depends on the visiting nurse to determine what her needs are. I hope this has been helpful.
On another note my husbands mother and father gave him power of attorney and the first thing he did was polace them in a nursing home. They were receiving meals on wheels and in my opinion not nursing home ready but he went behind everyone's back and sweet talked the judge-he was executor of the will. They both were forced into a nursing home. He sold their property and they died within 6 months. He didn't even divide the proceeds with his other brothers and sisters. People if you appoint someone to be the executor or executrix of your will please give all your children a copy. Plainly write out who gets what and have it notarized. I have seen families torn apart over their parents estates. . It is something we put off and all too often it is too late.

Both my husband and I have issues with non cooperative siblings and stubborn, difficult mothers who are ALSO fantastic manipulators. I think your mantra should stay "You DO have choices but you are choosing do to nothing". Then some empathy is nice - we will all be faced with this some day (I have some thoughts on that in a minute) but remain firm that you are willing to help - up to a point. Draw your boundaries, unless of course she is truly incompetent. If that is the case you can go to the measure of declaring her mentally incompetent and make her move, do what you think needs to be done, etc. I think on both sides what is wanted and is impossible is for this all to be nice and easy. It never is.
The take away for us is to never be this way. To us this means realizing a house is a house, not a living, breathing part of who we are. The folks we know and love who are truly happy and vibrant while aging are flexible. They moved into a more reasonable situation BEFORE they had to knowing the day was coming and not wanted to be faced with limited choices and having to do it because they were painted into a corner. Planning and realism is required for this and we are going to do that, we ARE doing that. I would try to find her some in home help to ease your burden. If your siblings won't step up then decide just how much you are able and comfortable to take on and that's that. Tap into elder resources in your community and check out all you can if she has insurance and get more of a life.