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I apologize in advance if this topic has been previously covered. I find similar questions, but not quite the same scenario or corresponding answers.

My mom will be 80 this year and about 6 years ago started displaying signs of dementia. MRI follow-up with doctor showed "white matter disease" and the neuro said she had vascular dementia.

The major obstacle here is she flat-out refuses to be seen by a physician. Apart from the dementia she also has severe osteoarthritis, has been diagnosed Type II diabetic, and has heart disease. She saw a doctor last 4 years ago! No amount of pleading changes her mind. She has a lot of pain, but still refuses. Prior to the dementia, she would on occasion see a doctor, but frankly, hates them. I don't know if there is anything that can be done for the dementia - I would say it is moderate heading toward severe - but I would love to have her seen by a professional. She is currently not on any meds.

We live together and I am the only caregiver and am disabled from several autoimmune diseases. I have one sibling who has no contact with us and no other family. I am unable to leave her for any period of time and have no type of support. That's another thing - she will not have anyone in her home. I offered to have a doctor come to the house well, her response was too colorful for this forum. I cannot leave to attend caregiver support meetings. At the risk of sounding whiney, I am having increased trouble with my health now due to the stress of dealing with the ins and outs of Mom's dementia.

I should add that I do not have POV, nor does she have ANY legal forms in place. I think she thought she "had time", but now, time is running out. I have to admit, this scares me - I love my mother and want to do the best I can for her and not leave decisions up to someone else who doesn't care.

I am thankful for the info I have gleaned from this site. Prior to this evening, I have felt very depressed, but reading many of the articles has shown me I am not alone.
Thank you for your suggestions and answers.

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Stop waiting on her hand and foot and focus on your own health. Leave when you want to, go when you need to. Tell her to call 911, not you, for the next crisis. Stop enabling her addiction to your attention. The sooner she ends up in a hospital, the better off you will both be in the long run.
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If I ever saw a case, where the patient is going to outlive the caretaker, it is yours. What happens to your mom, when you die? She should not be allowed to sap your life away. I watched this happen in my own family. Mom is great now (for her age) and my sister died taking care of her. Get whatever help you need and do not look back.
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What a terrible way to respond, though I agree. (I think it could have been said better personally..). Regardless, G-man is still right. There needs to be some other type on contingency that needs to be put in place in case of an emergency while youre out so that you can be out to take care of yourself. I kinda had to do that with my grandmother so that she would realise that I dont just live for her.

As for the will, if she cant realise how important it is to have one, you might have to appoint some type of guardian to assist with end of life plans. Im not sure about that though, so you might need tp hire lawyer.
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Your mom has dementia and can't reason. You don't ask her if she wants to go to the doctor. If you are lucky enough to have a doc who will come to the house, you make an appointment and make up a story about who s/he is. Your mom is going to outlive you if you don't get help. And what happens to her then. Alternatively, let her manage by herself for a bit. When she lands in the hospital, you've got the social workers and discharge planners to help you. Good luck!
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Getting an older person to realize the importance of going to a doctor when they are 85+ is difficult because most say that they can't do anything about my problems and I don't want to spend the time and money. SOOOOO you have to make going to the doctor a payoff for them. Here is what I suggest: Tell you mother that your problems are not getting better and she will need to know what to do just in case something happens to you--you may not always be able to care for her. You have to let her see the importance of her making the move to go to the doctor. Tell her that if something does happen to you then you are not sure what will happen to her--she might have to go to a nursing home or move somewhere to get help--Don't make the conversation sound negative or punitive, but a fact that she will have to deal with. She has to understand that you may not always be there for her!!!! And now is the time for her to get some help while you are still there to assist. I believe that once older adults have a good reason to see the doctor they usually go. Before you talk to mom, practice what you are going to say--try to avoid any kind of blaming conversation--you phrases like "I feel . . " Don't agrue, scold, or get angry as you are just stating the obvious, which is "I really feel that you should see a doctor not just for you, but for me. If something were to happen and I am not here, then a person would be able to know about your and give your help. Impress upon here that you want to make sure that she is taken care of in case of emergency." The conversation may not stick with her the first time she hears it--try again latter. Now if that doesn't work, I want you to remember that you are the important one in this role--You are the one giving the care and need to make sure that you take good care of yourself. Stop the chatter with your mom and take some positive steps for the good of you both. You have to be ok, rested and ready to get and provide care. I would seek assistance from the community for campions and many of those services are free--call the local Area Agency on Aging to get answers to some of your questions for assistance--Be resolute, strong and assured that you are doing the right thing for you and your mother. Peace!
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You wrote, "At the risk of sounding whiney . . ." You don't sound whiney to me. What you sound like is a prisoner who needs to break out of prison, away from a bullying jailer. Please, please follow Sue Maxwell's advice and contact some local resources to help you engineer your prison break! You don't need to totally abandon your mother, but, as previous posts have indicated, you are pushing yourself into an early grave with the way things are now.
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Thank you all for your wise insight. Last August I was very ill and needed to be hospitalized, but left AMA for fear of what might happen at home. (I have two small dogs and would fear for their welfare.) It's interesting to me that none of my doctors seem to have a shred of info to help with this situation, not even the GP. Makes me wonder what they do with their dementia patients. Anyway, that's irrelevant. I do feel like I am in jail and appreciate that all of you understand that. There is an Area on Agency here and I have spoken to the gentleman in the Alzheimer's/Dementia "dept." He has told me he can offer much assistance and I will see him gladly. Again, thank you all so much for taking the time to offer your assistance. It is GREATLY appreciated!!
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JulesInCal, I know where you are coming from. My father did not want to go to the doctor. In fact, he didn't want to leave the house. We were able to get him to the doctor a few times by just telling him he WAS going. We gave him no choice. It was most unpleasant, so I know what you're going through. If we had tried to convince him to go, he would have never gone. He would have rather died of pain than go to the doctor. My father was extreme, though, since he was deaf and nearly autistic when he was old. I don't like to remember these times, since each trip to the doctors was traumatic for me.
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Jules, I'm so glad to hear you've started the ball rolling. Best of luck, and never turn away help - no matter how many complaints you hear about it!
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JulesinCA - autoimmune disorders mean you are constantly having health challenges and expenses. I'm so sorry. Life is so challenging just with that.

My husband and I are currently dealing with his parents (94 & 92) who both have stubbornness about going to the doctor. Not sure about your state laws but in OH the elderly have their rights. If they don't want to go to hospital or stay in hospital, NH or Rehab, no one can make them. Including the medical profession. (More on that for those with questions.)

If your mom refuses anything a doctor wants to do, he cannot do it. Father in law (FIL) who has Rheumatoid Arthritis took a terrible fall, had a couple of cuts and fractured his hip and tibula. The squad came (who will only allow 3 refusals to transports before charging) to get him up. He, for his third time refused (MIL with dementia signed a paper for this) and it took until the 4th day before a healthcare agency could persuade him to go to the hospital with him transporting. Even then FIL felt that his son put them up to it. So mad and uncooperative. The hospital had to investigate domestic abuse due to the bruising and fall. So don't let that surprise you should she have a serious fall due to both dementia and osteoarthritis.

FIL's hip by the Trauma Unit was described as "IMPRESSIVE" which means they have never seen a hip so far gone without the patient being on some kind of pain med. Surgery is out of the question. Your mother sounds to be this stubborn, too.

Before this, FIL was falling regularly and if he remained on the floor he battled edema. One of his experiences due to his not seeking medical assistance was that when hubby finally got him to hospital, they eventually had to withdraw the fluid from his lungs via a needle in his chest.

My husband had to have a heart valve transplant and his brother came up, got a lawyer to come to the house, get the paperwork filled out for POA. THEY HAD NOTHING BUT A HAND WRITTEN WILL WRITTEN 25 YRS AGO. FIL tried to revoke them a month later once his meds improved his condition but never followed up on paperwork. Did you catch the "meds improved his condition" His dementia is one that he can handle simple things but not complexed issues -- he talks in circles, combative.

Use this example as a motivator. Guardianship takes money for lawyers and time. Then the battles could be horrific. No doubt you will need your money for your own health. I cannot imagine from your messages, that guardianship is something you want for your own state of mind. I respect that. For yourself, do try Sue Maxwell's approach. BUT read on.....

I failed to mention that my MIL enabled FIL's behaviour by being subservient. It resulted in horrible arguments, because MIL just was not able to help. He would say "She wasn't good enough, she didn't know what she was talking about, she says horrible things about him" --- don't let it come to this for you. Tough love works well. She is becoming the child and you the mom. With love, draw the behavior line. Does that make sense?

And if you have a second floor, keep her on the first and escape to the 2nd for your sanity. Having your own space helps.

Keep us informed. I will be reporting back to pstegman once FIL is home longer. He is currently receiving in-home PT and OT. We find out next week. The concern is if Medicare will cover his expenses if he doesn't keep trying.

Please understand that your situation will get much worse. Action now for yourself. And for yourself, don't turn away from natural products. Hugs!
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If she knows even with dementia she "hates doctors" why don't you just let her live her life the way she wants, and when an event occurs, the ambulance will take her to the hospital where she can get help. Don't let her illnesses make your even worse. Let her know if something happens to you, she will be on her own (see what happens).
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ferris1 This is what we are trying to do for my husband's parents. Unfortunately for JulesInCA, she has auto immune disorders that will complicate mother living with her. My husband's parents are clearly affecting our lives and we are just in recovery from my husband's valve transplant. If JulesInCA mother arrives at the hospital and says she wants to go home, at least in Ohio, she goes home. The only reason my FIL didn't go home was because he physically could not walk out of the hospital. JulesInCA's mother appears to still be walking.
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All good advice there is nothing worse for the immune system than "STRESS" I am in same situation and have decided I may have to leave as the stress is too much like you mum refuses to go to the doctor,talk to nurse who calls,communicate with carers,talk to cleaning lady?? My mum was told by a geriatrician she had "brain deterioration" all from her uncontrolled diabetes since then she has no interest in seeing doc AS she knows at times she is losing it and is in "denial" no matter what I say or do she gets very angry and aggressive. One time she screamed at me "what the hell can a doctor do for her now?" you know maybe shes right? what can they do? I check her bloods but its her blood pressure that needs to be montitored as their main risk is heart attack and stroke. ive told her doc everything he says theres not a lot I can do if she refuses help? she cannot go to a NH if she dosnt want to so yes one post is right until she falls or worse only then will she see that she needs help.
All I can advise you to do in the meantime is just keep an eye on her bloods and bloodpressure and of course her diet?? I know its hard and how unbelievably stubborn they are. I would also try and see a geriatrician they are better at understanding "dementia" than a GP and are VERY supportive of carers. The advice post was good I never thought of that to explain to her that if something happened to you what would happen to her? I will try this and see what happens. Like you my mum cannot understand that ive had a stroke and how tired I am she NEVER WILL this is going to get worse and I know that now is the time for me to leave before I have another stroke its so hard when you've no money and nowhere to go to think about looking for another job etc.....but our health is important too ive learnt to force myself to become less stressed as ive had to or risk another stroke. please don't wait like me until something happens to you before you get help as another post says she could even with all her health issues "outlive you".
Big hugs as I am walking in your shoes I even have digestive problems and immune issues its ALL stress the less stressed I am the better my stomach feels. Try and switch off from mum and think of you go for a walk,stay with a friend have nights out if you make her your whole life you will get very ill. As ive said before the more you back away from mum the MORE she appreciates me!!
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Again, I thank you for the responses after my last comment.

JessieBelle, I am sorry that those doctor visits were so awful for you! I have wondered about just driving Mom to the doctor's office - I can only IMAGINE her outburst! But, then, that might be a good thing for the doctor to see! She has always had good health, but her un-acceptance of doctors comes from a childhood trauma. She has never been a doctor-going person and frankly, never needed to go. And I KNOW she knows she has problems that need to be addressed - her knee pain alone is excruciating, but she is convinced there is no help for her. Much of this is thanks to her last physician - he was useless. And I let him know it! Funny I don't have a problem telling off a doctor, but can't boss Mom! Now, she has the best doctor in the town we live in - and he's great - but if I can't get here there, he's not much good either.

OliviaC, I feel for all you have been through. Your discussion about the EMTs and your Father-In-Law reminded me of a situation about a month ago. When Mom had an episode where she didn't recognize me, she got incredibly agitated, screaming "Get out of my house or I'll call the police!" I said, "Let me call for you." And I did. They sent the squad out, placed her on a stretcher as she screamed about me. They removed me from her sight. Her blood pressure was sky high and they called for a police officer to come - apparently the PD has to dictate whether she can be taken in for this type of situation - I don't quite understand it. Anyway, after a while she started talking about her daughter and they brought me back to her. She was SO happy to see me, telling me how she was so scared of this woman she didn't know who had been in the house (me!). Anyway, the police officer never showed - shorthanded, busy, etc. - and she settled down, so they didn't take her to the ER. They asked me if I wanted her taken and I said YES, but then once she calmed down and was more sensible, they didn't feel the need to and she refused - of course. They tried the angle of her blood pressure being so high, but she wouldn't go. I imagine this situation will present itself again at some point.

I don't mean to go on and on, but I so appreciate having a place where others know what I'm talking about and understand what I am feeling. We moved to a different town about 10 years ago, after 40 years in the same town. Geez, had I known it would be like this I would have NEVER let her sell the house. :(

You will find it ironic that just a few short years ago she was MY caregiver. I have Systemic Lupus among other illnesses and the lupus had attacked my brain. Mom did EVERYTHING for me. I couldn't read, count and barely walk. Thankfully, after two years of chemotherapy the lupus backed off and I am certainly better. But, you can imagine the number stress plays on this disease. This past August, after 12 years in remission, I found myself in a terrible ulcerative colitis flare. I am better, on major meds, and coping. :) Probably TMI, but again, it's so nice to know others "get it."

Thank you, thank you, thank you for your caring comments and straight talk. I will let you know what I glean from the gentleman at the Area on Agency.

I hope you all have a great weekend. :)
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I just read the messages I missed from ferris1 and kazzaa.

Ferris1, I have lately found myself just letting Mom "be". I do believe it will take an injury/accident before she receives help. She has had a few falls - one pretty bad - and refused help. I dread the thought. Again, a situation like the one that led to the paramedics being here might be the thing that changes it all.

Kazzaa, we sound much alike. Being chronically ill was hard before, but now, well, it feels like I have fallen in a pit and cannot climb out. I have been on SSD since 1998. Limited funds and no home other than here, which makes it very hard to go. Where? My brother has nothing to do with us. Frankly, I think he recognized the dementia long before I did - he's a police officer (well, now retired), and has seen plenty of this. I think if I wasn't so angry, I might be able to deal better. I'm working on it, but am not very good at letting do. :) I do have a very caring half-brother and his wife, but they live in Northern California - about 8 hours away. Too far away to get a night away, but ultimately the place I will land one day.

Thank you all! Your comments are invaluable!!
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If your mom can say "I am not going to the doctor"she is still probably okay to make out DPOA. My mom was stubborn too, and I mean wicked! I couldnt get her out to a doctor, no one could come in and she was fine alone (she thought).It took my constant phone calls and visits to keep her as safe as possible until one day she fell and broke her hip. That was our ticket to safety,recovery at my home, still here years later. IT might just take that until she leaves your home. An illness or accident will happen eventually and in the mean time all you can do it talk to her and try to convince her, very sad for you both.I am also in "jail"and understand. You are right not to leave her alone,she could leave the house, start a fire, anything! They loose their reasoning and you dont ever even realize how bad until they do something really unremarkable.
Unless you force her into a nursing home, what else can you do.Good luck!
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Poor you, Jules. And if your mother had to watch you going through SLE treatment it would explain why she's gone off the medical profession in such a big way. Ironically, she probably doesn't want you to share that experience - it's turning out to be fantastically counterproductive, of course, but maybe that's what's behind her ornery attitude.

Stick like glue to your own health guidelines, and I hope the various agencies will be round to give you practical help very fast. Stay well x
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The woman across the hall, from my MIL (in AL) was sick this week. She has no family or friends. The ambulance was called and the EMTs had to stand around for 15 minutes, and in the end, she refused to go. 24 hours passed and she was still in pain keeping the aids busy running into her room. Finally, they told her she HAD to go to the hospital, there was to be no refusal. She was fighting the EMTS every step of the way. All of the octogenarians on that wing had to hear it.

I am sorry your Mother won't co-operate. Mine doesn't like to go to the doctor either, but it is basically because it is hard for her to travel.
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JulesInCA
Elders avoid Docs for many reasons--here are a few:
===Avoided Docs for most of life--could've been mentally ill, feared being diagnosed with mental problems, due to what happened to someone else...fear both the diagnosis and treatments over time.
===Avoid trigger-destinations--those they fear might compromise their remaining freedom even more.
===Hurt by Docs in past, fear more.
===Religious belief.
===Don't want to prolong a compromised life.
===Scrambled thoughts can't make sense of it, which becomes scary.
Plenty more!
If you have some clues WHY they dig in their heals, it's often easier to re-route their attention or something, to get them do comply with what's needed.

Dementia'd person has decreasing ability to making sense for more than a few minutes, if that, depending on progress of this ill.. Trying to explain anything logical to them, is not likely. How much real communication can happen, is very individual.

Could started by calling the local Area Agency on Aging:
---Request Social Workers do an in-home evaluation of the Elder.
-----Tell them your concerns for both Elder and your own health,
------that Mom has not seen a Doc for years, you worry there might be need, and nothing established
------need help getting her to Doc for a Checkup at least
===and you can't do it===.
------Let them know Mom may not be safe in your home, due to your own ills, if necessary!
------Describe the help you need for Mom.

Bottom line?
Even demented persons have some ability to choose---some by not going anywhere that might result in prolonging their miseries. Others by refusing to eat, etc.
If Mom is basically comfortable, and clean and safe, even without a Doc, that is a choice--and it might be OK, depending on your feelings..
If she has ills needing treated, you might need Social Workers to help get her that treatment, OR, it's also some's choice to just let that go, to let the person avoid what they want to avoid.

Worst thing?
IF Mom dies without seeing a Doc for a long time, you might be required to have an autopsy done, to reveal cause of death,~ unless there is some nice Doc who will just write on the certificate "old age dementia and sequelae".
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This past Thursday my mother awoke and was sitting on her bedside and when I saw her and sat down to speak to her I could hear "crackling and wheezing" when she breathed. She argued, that she needed no help and was fine. I allowed her to go on that day but the next morning it was the same or perhaps a bit worse. I could clearly hear bronchitis or pneumonia. I called and got an appointment with the doctor and when I told her, all hell broke loose. She argued and fought that she was fine there was not reason to go. She threatened me and demanded that I cancel the appointment....it went on and on.

Finally I told her that she was going or she was going to wind up in the hospital. She kept arguing, I finally told her that if I had to call both of my sisters, we were going to drag her butt to the doctor, no ifs ands or buts! Now I admit that my vocabulary could probably have been nicer, but after hours of her yelling at me, I had, had it!!!

She has dementia and cannot make the best choices for herself, that is why I am her POA. You listen and deal with the crap as long as you can and then you have to make a stand and say "no more bull----!" In your instance if you are quite ill then it sounds like you both need help and your mother needs medication to quiet her down and quell the tantrums. It is time for it. We just began my mother a few months ago and it was working great but she began getting headaches and so we had to stop one of the meds. I have to get them to institute another one as I cannot live through the hell she has put me through. The tantrums and argumentative behavior is just too overwhelming. I too am on disability and have medical problems of my own.

Is there any family member who can assist you? If not call a social worker perhaps they could help you.

My thoughts and prayers are with you.
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Chimoner, thanks for all of that great info! I am printing out all of these excellent comments - they help me see what is and isn't important. HolyCow, sounds like our home. I am sorry you, too, are dealing with this type of thing. Not easy when one is well, but with illnesses of our own, well... This was what I meant when I talked about taking Mom to the doctor. Not only for the physical issues that plague her, but for the terrible cognitive problems. It's a daily struggle now with her outbursts and cruelty. I have one brother who walked away 10 years ago. Mom called him a few months ago during one of her episodes - she thought he was her brother - and when he spoke to me briefly his advise was, "If she threatens or hits you, call 911." Gee, thanks.

Once again, a broken record, but thank you all for your comments! They are so valuable to me!!
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Chimonger, You present something new to think about with your saying that if the mother dies without going to the doctor, the POA may be required to have an autopsy done (probably at her expense). Please advise if this is a state by state requirement and if so, where does one fine which states would require this.
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Olivia, when someone dies at home, the coroner will contact the patient's doctor. In my father's case, his MD signed the death certificate, listing numerous things that could have killed him. Now where the dead person has not seen a doctor in many years, the coroner/medical examiner will do an autopsy, at state expense, to determine the cause of death and to rule out any foul play. It is possible the caregiver could be charged with negligence or even negligent homicide, so it is very important to have witnesses, like EMT's, who saw and heard the patient refuse care. To protect YOURSELF, you call 911 and when the patient refuses to go, you are protected from those criminal charges. This is especially important when your pain in the arse relatives accuse you of neglecting their "beloved one" from afar.
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