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I know that all dementia patients are not the same, but have discovered over the past few weeks that my mother is far more capable of respecting boundaries than I had thought. I think maybe at least part of the time she is "demented like a fox". A couple of years ago before my father passed away it became necessary for me to drive my mother to appointments while she was recovering from a fall. For the past 2 plus years every time I drove her she would shout out unexpectedly that cars were about to hit us, to the point that I nearly wrecked several times. The cars she referred to would sometimes be as far as a block away. She insisted that she could not help it that it was "just the way I see things".
Finally in frustration one day I told her I know that you say you can't control this, but it is not safe for me to drive you when you do this. If you can't stop shouting out we will have to find some other source of transportation for you. The behavior stopped immediately and she has never done it again, nor does she act freaked out when I drive her.
Not only was the behavior uncalled for to begin with, but she was totally capable of stopping, and capable of remembering not to do it again. My husband and I have done this with several other of her controlling behaviors since then and very often it has stopped those problems as well. There are times when there is no doubt that she has dementia, but we have discovered that some of her behavior is by choice.
We have tried to gradually test the water to figure out which behaviors she can and can't control. Again, I know this will not be the case for all but is worth a gentle try.
A person being cared for is the legal responsibility of person or facility that caring for them [present-tense]. If facility/caregiver quits care/discharges a patient they have been caring for, WHEN that patient lacks appropriate care once they get out that door, the facility or caregiver is committing "patient abandonment".
What would have happened if you refused to allow her to come back to your house?
The Discharge Planner or Social Worker at the facility would have been upset, maybe try to coerce you to accept elder back, may have even threatened a bit. But legally, they are responsible party until the patient is properly discharged to appropriate location/other caregiving person & place.
A caregiver can refuse to accept elder back in caregiver home, as they had legally turned over care of the elder to the facility for care. We simply do not often do this, because the elders are our loved elders, no matter how devastating they behave towards us.
When she acted-out at the rehab people, THAT was a cue her DOC needed to take responsibility to do further assessments. WHEN a Doc "misses that opportunity" [they dislike doing these, there are such gray areas to deal with], it means the patient has been improperly evaluated--THAT happens LOTS of times, at all levels of care.
The home-caregiver can give detailed input to the Doc, the Hospital Soc. Worker, the other nursing staff---the sooner, the better, AFTER FACILITY HAS ELDER UNDER ADMITTED CARE, in a bed receiving treatment/care. This does not always work: My Mom managed a great "show-timers"; and her nursing and psych evaluations never caught her behaviors, beyond that she seemed "quirky".
UNfortunately, once caregiver accepts elder back into caregiver house, they are STUCK, unless/until more traumatic events/behaviors occur; once back at caregiver's residence, it's more difficult to get assessments and then to get the elder removed from that home. ...Hot potato!
But if caregiver refuses to let elder return to caregiver house, while elder is responsibility of the facility-- [[caregiver tells Hospital Social Worker or Discharge Planner: you cannot let elder return to your house--firmly--list own health issues, family issues precluding elder returning to caregiver house..]], the Discharge Planner/Soc.Workers must find other housing for elder. That may be an adult care home, or other long-term facility. They also must figure out how to pay for it: elder's funds, insurance, DSHS or any combination.
SOME States also start billing the family.... BUT, if family cannot afford to help pay [much proof/paperwork] , State usually does not pursue them for payment: State does not want to force family into destitution, lest State have to also pay for them.
Hospital Soc. Worker / Discharge Planners have greater tools to smooth getting elder into other appropriate facility, than home-Caregiver can. Sometimes putting your foot down like this, can cause angry rifts in families, and Workers can get angry too. BUT, they can make it happen pretty fast. Elder is the responsibility of the Hospital as long as they have them under their roof, PRIOR to discharge process.
Once at home, though, you still have Area Agency on Aging, Social Workers that can be scheduled to do a home evaluation--pressure them to keep it going for more than 2 hours, to hopefully start witnessing elder's behaviors. In the interim, you can write notes on the calendar about elder's behaviors, then write them up on a paper you can hand to the Workers doing assessment. ==You can give a copy of your observations to the Doc: IF I had not done that, the Doc would have suckered for Mom's drug-seeking--he left the exam room to re-read her chart, found my notes entered into her chart . He returned and wrote a script for something over-the-counter Mom had never heard of. I only wish he'd have witnessed her epic outbursts when she figured out what he'd done, though, because then maybe I'd have had some better grounds to get her into a care facility, out of my home, sooner. I had made a huge mistake, in allowing her to return to my home, once the hospital had her admitted for treatment, though...I didn't know, and by that time, was so beaten down, I was unable to think straight.
Don't wait that long! --if you are in an untenable situation, get whatever help you can find, to get your elder moved into other proper shelter, to preserve health and sanity.
I am so fortunate and usually get praise and thanks from my mother with Alzheimer's. Occasionally she gets angry and says things like she wishes I would leave her alone or "I'm glad you aren't my mother" or "You must have been a terrible mother, I feel sorry for your children". Those are the times, and perhaps it is easy because the anger is not very often, that I just have to walk away. There is absolutely no reasoning with her when she gets this way. I am thankful that the anger and abusive behavior towards me is not the frequency that you have to deal with!!
And don't forget if it is a sudden change it may be another medical condition causing the behavior, like a urinary tract infection.
SusanJMT: I went through this exact same thing with my mother (I can't believe that physician called your mother a "curmudgeon!! wow....) who allowed herself to dehydrate to the point that she had to be hospitalized....this was done on purpose so that she WOULD be admitted to the hospital, and get three squares that she wouldn't have to make herself, not to mention the pamering and attention from the staff. She fully expected to stay there as long as she thought she was entitled to. I was absolutely disgusted! After three weeks, two rehab nurses came to meet with her to discuss the rehab cardiac course they thought she should undergo. Ironically this would have bought her two more weeks in the hospital. When they asked her if she would sign up for it, this is what they recommended (but she would have to pay $200 for it and do all the exercises, no "fudging") she pounded her fist on the bed and said "ALL RIGHT!! If that's what you want I'll do it!!" The two nurses looked at each other in horror and left the room.......and that was the end of the rehab program. What I'm getting at is: if she had agreed to that program, at the end of it they would have looked for a place for her to go to and I wouldn't be burdened with having her here in my home. She was discharged at the end of that day and because her dr. said she could not live alone any more, yet didn't have a referral to a care facility (nor would she pay to go to one!) it was left to me - the only family member with a house big enough to accomodate her - to take her in. So here I am, just like the others on all the threads on here, trying to do the right thing and be a good guy, but at the expense of my own rapidly disappearing life.
All of this is good advice! Wish I 'd had it when Mom was under our roof! It's SO hard to prevent one's own mind and emotions from "taking it personally", when elders act-out...only some easier if caregiving for non-relatives. Even knowing why they are acting out.
Even without dementias, elders who have lost much, are increasingly limited in their own abilities, tend to act out more, get tired easier [[we used to call this "crabby baby syndrome" where I used to work --little kids get that way, too, when their minds can think things their bodies cannot keep up with, and they wind-up and act-out when tired.. even normal working adults can get this way!]]
The less autonomy a person has, the greater the acting-out. Adding in dementias or other disorders, only ups that ante.
I do not think anyone can truly handle these situations 24/7, alone, and preserve their own sanity and health. Caregivers need "backup" and support systems too!
Please look for whatever is available in your community or county. There is far more now days, than there ever....free.
Could start with Area Agency on Aging, and get suggestions from them. SOME local pastors might also have suggestions.
Bottom line, if a caregiver is at their "last straw" point, cannot find help in that moment, and is about to completely fall apart, it is OK to call the local Suicide Prevention line [front of most phone books], and ask for some suggestions as to where to find support systems you need.
Make a phone list of the various agencies, so you can more easily call them to see what else they might have up their sleeves to help you, too. Things change over time; some of the people at agencies are better informed than others. {{{hugs!}}}
I also have to confess that at one point when I was taking care of Mom in my home I was so worn that I told Mom she could go anywhere else she preferred. I offered to call a taxi and pay the driver to take her anywhere she wanted to go. This actually improved our relationship for a couple of months, but Mom's depression took another route, leading to lack of interest in living to the point one day of not wanting to eat or drink. This was a blessing in disguise for it moved me to hospitalize her immediately though the admitting physician was unable to find anything physically wrong with her, except that she was a terrible crumudgeon (his words). Depression can lead people to this very low point. The route from hospital to rehabilitation to assisted living ++++ turned out to be the only route by which she would accept moving to assisted living. I have spent down most of my savings but am now able to look for another job. Big yea!
There are many possibilities causing this. I can only report my experience. For three years, Mom treated me like the hired help and very badly at that. She complained bitterly from the moment we started the day until the moment I fell into bed after an exhausting 22-hour day of her total resistance to anything needful. Ok, so much for me. I considered every possibility but was influenced by my knowledge of her life-long depression and inappriate anger which was exercised on anybody nearby (which was only me). Tried everything, including review of her meds, but more drugs were the answer - PROZAC and ARICEPT. Also check for infections which affect the brain function of older people moreso than younger people. Finally I found the right level of care for her; I partner well with the medical and administrative staff to help them understand her, and she is a willing patient about 95% of the time. I consider this success, though I am struggling to fill the cash flow gap in her support.
My mother (age 84) explained to me that as she has gotten older she has a harder time doing things, sometimes simple things. This causes frustration and a bad mood. Some depression too because of not being able to move around and do things for herself easily as she once did. Not being able to remember what needs to be done or how to do something causes frustration. This is not dementia but just slowing down physically due to age. Please speak w/your mother's doctor(s) about a review of ALL medications and drug interactions too. Your local pharmacist can be very helpful too in this regard Just pick a slow time @ the pharmacy to do this. Lastly, please stick up for yourself and tell your mom as you would a little child that talking to someone that way or using hurtful comments IS NOT polite and will not be tolerated. Sometimes our parents need to be reminded to be polite as they sometimes get wrapped up in themselves and their aches and pains. It's almost as if when we age we revert to the " terrible twos" in our acts and behaviors! Maybe your mom needs a hug, kiss and I love you "timeout" too.
Castle, you are a far better person than I am. I do not have the patience it takes to deal with bad behavior...even though I understand it isn't the patient's fault...often they don't even know what they are doing/saying. Intellectually, it is easy to comprehend. Emotionally/psychologically it is a very different story. As you can tell, I'm having a very bad day, but the truth is, I am not cut out for this. I know this, but it doesn't matter. If I don't take care of my husband, no one will. It's me or nothing so I am stuck in a situation I am not equipped to handle.
I think there are ways to deal with this, and I worry that so many of us see horrible behavior and our only idea is to ask the doctor to "fix" it. Medical people have this solution, for the patient is only with them briefly, but at home, it is a long-time situation, and slower, gradual improvements are possible. You are right you can't discuss it with them - but you can try to time the moments when it seems worse than others. You can and must set your boundaries in incidents as they emerge (not in agreements ahead of time, for they forget). But when they unfairly criticize you, you can listen to a complaint once, try to investigate and resolve it, maybe listen twice - but if the person keeps complaining, you can say, "OK, I don't have to listen if you want to continue criticizing me. I will be in the next room, and check on you in 5 minutes." That approach was easier for me to practice as a paid caregiver than with relative, but it's amazing how nasty some folks who are not family can get - and of course as family, we may find ourselves stung more deeply. But it's important to learn to listen, then say why you have to leave, and give a time when you will come back. Then I'd go in the other room and sit, read my book and wait, and after 5 min, sometimes 10 if needed and she was sitting or lying safely - go back. If it starts again, say, I'm sorry if I did something that upset you. Ask if you did. Apologize - resist defending, they can't follow a train of thought or complex conversation that far. But if you've been brief, tried ot understand, apologized, and they start again, just say again, I care about you, but I can't just listen to you criticize me over and over, I'll be back in a bit, and maybe we can try again. And just LEAVE, even if they are still talking. Repeat as needed. I found that my elderly lady calmed down and often apologized, and I also noticed that she did it most when she was afraid to get out of her recliner when I wanted to get her up and walk with walker to bed so she could sleep at night. When she was tired, she was afraid to get up, as she was less able, and she told me one day that she had lost her memory and could not remember where she was supposed to go after she got up. Another longer term option: a different lady, who was bed-ridden used to swear like a trooper, and most people kept correcting her without result. When I taught myself to handle this behavior calmly, rather than focus on it and make it worse - I noted that she really escalated when she was about to be touched to be moved or cleaned - her skin was so sensitive, likely because of the meds she was already on. This taught me to prepare her by telling her clearly that I was starting the cleaning procedure and had to touch her, and as I started, I would be careful and watch her reactions and pause if needed, and when she saw that I was alert to help her with her fears, she also made an effort. And at other times, I read stories to her - that often worked better than conversations, and the pleasant experience together helped us both move away from the oppositional times, and they lessened a great deal, and she began to find small ways to say nice things to me.
3pinkroses and scared are right on the mark! I went through this for many years and my mother was committed three times before we finally got a proper diagnosis of bipolar and mild personality disorder. After many years on lithium, I noticed her disorder progressing. I told her we were taking her in for a check up, but told the doctors office ahead of time what else was going on; this allowed the doctor to ask all the right questions and not put the blame on me. After checking her out, a normal exam with blood work, she was other questions that she couldn't deny in front of me. The doctor was able to see her demeanor and added an additional medication that is normally used in schizophrenia. Although she didn't like it, she started taking it and is doing much better. Best of luck to you. Hugs, Suzanne
You must talk to the doctor as soon as possible. You cannot reason with someone with dementia...I found out the hard way. Call the doctor's office and set up an appointment for you to talk to the doctor one on one. It's really important for your peace of mind and your physical and mental health. These kinds of problems will eat you alive...believe me, I know. I've been there.
Thank you very much, 3pinkroses....I will look over the site and see what advice there is there for me. Yes I agree about medication. I think she needs a complete review since shes been on the same ones for about 4 years now. Of course when I suggest that I get ' you're not a doctor - how would you know'? I definitely think there are mental issues which have been exacerbated by her ageing so perhaps it's time for a meeting with her doctor? Thanks for listening, and hugs to you too!
I would go to the narcissistic web site for ideas as well as look back on this forum as the topic is discussed by so many of us who have dealt with it.
Could be mixture of personality disorder and other mental health problems going on for which medication can help tremendously after a proper diagnosis.
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Finally in frustration one day I told her I know that you say you can't control this, but it is not safe for me to drive you when you do this. If you can't stop shouting out we will have to find some other source of transportation for you. The behavior stopped immediately and she has never done it again, nor does she act freaked out when I drive her.
Not only was the behavior uncalled for to begin with, but she was totally capable of stopping, and capable of remembering not to do it again. My husband and I have done this with several other of her controlling behaviors since then and very often it has stopped those problems as well. There are times when there is no doubt that she has dementia, but we have discovered that some of her behavior is by choice.
We have tried to gradually test the water to figure out which behaviors she can and can't control. Again, I know this will not be the case for all but is worth a gentle try.
A person being cared for is the legal responsibility of person or facility that caring for them [present-tense].
If facility/caregiver quits care/discharges a patient they have been caring for, WHEN that patient lacks appropriate care once they get out that door, the facility or caregiver is committing "patient abandonment".
What would have happened if you refused to allow her to come back to your house?
The Discharge Planner or Social Worker at the facility would have been upset, maybe try to coerce you to accept elder back, may have even threatened a bit.
But legally, they are responsible party until the patient is properly discharged to appropriate location/other caregiving person & place.
A caregiver can refuse to accept elder back in caregiver home, as they had legally turned over care of the elder to the facility for care.
We simply do not often do this, because the elders are our loved elders, no matter how devastating they behave towards us.
When she acted-out at the rehab people,
THAT was a cue her DOC needed to take responsibility to do further assessments.
WHEN a Doc "misses that opportunity" [they dislike doing these, there are such gray areas to deal with], it means the patient has been improperly evaluated--THAT happens LOTS of times, at all levels of care.
The home-caregiver can give detailed input to the Doc, the Hospital Soc. Worker, the other nursing staff---the sooner, the better, AFTER FACILITY HAS ELDER UNDER ADMITTED CARE, in a bed receiving treatment/care.
This does not always work: My Mom managed a great "show-timers"; and her nursing and psych evaluations never caught her behaviors, beyond that she seemed "quirky".
UNfortunately, once caregiver accepts elder back into caregiver house, they are STUCK, unless/until more traumatic events/behaviors occur;
once back at caregiver's residence, it's more difficult to get assessments and then to get the elder removed from that home.
...Hot potato!
But if caregiver refuses to let elder return to caregiver house, while elder is responsibility of the facility--
[[caregiver tells Hospital Social Worker or Discharge Planner: you cannot let elder return to your house--firmly--list own health issues, family issues precluding elder returning to caregiver house..]],
the Discharge Planner/Soc.Workers must find other housing for elder.
That may be an adult care home, or other long-term facility.
They also must figure out how to pay for it: elder's funds, insurance, DSHS or any combination.
SOME States also start billing the family....
BUT, if family cannot afford to help pay [much proof/paperwork] ,
State usually does not pursue them for payment: State does not want to force family into destitution, lest State have to also pay for them.
Hospital Soc. Worker / Discharge Planners have greater tools to smooth getting elder into other appropriate facility, than home-Caregiver can.
Sometimes putting your foot down like this, can cause angry rifts in families, and Workers can get angry too.
BUT, they can make it happen pretty fast.
Elder is the responsibility of the Hospital as long as they have them under their roof, PRIOR to discharge process.
Once at home, though, you still have Area Agency on Aging, Social Workers that can be scheduled to do a home evaluation--pressure them to keep it going for more than 2 hours, to hopefully start witnessing elder's behaviors.
In the interim, you can write notes on the calendar about elder's behaviors, then write them up on a paper you can hand to the Workers doing assessment.
==You can give a copy of your observations to the Doc:
IF I had not done that, the Doc would have suckered for Mom's drug-seeking--he left the exam room to re-read her chart, found my notes entered into her chart . He returned and wrote a script for something over-the-counter Mom had never heard of.
I only wish he'd have witnessed her epic outbursts when she figured out what he'd done, though, because then maybe I'd have had some better grounds to get her into a care facility, out of my home, sooner.
I had made a huge mistake, in allowing her to return to my home, once the hospital had her admitted for treatment, though...I didn't know, and by that time, was so beaten down, I was unable to think straight.
Don't wait that long!
--if you are in an untenable situation, get whatever help you can find, to get your elder moved into other proper shelter, to preserve health and sanity.
And don't forget if it is a sudden change it may be another medical condition causing the behavior, like a urinary tract infection.
After three weeks, two rehab nurses came to meet with her to discuss the rehab cardiac course they thought she should undergo. Ironically this would have bought her two more weeks in the hospital. When they asked her if she would sign up for it, this is what they recommended (but she would have to pay $200 for it and do all the exercises, no "fudging") she pounded her fist on the bed and said "ALL RIGHT!! If that's what you want I'll do it!!" The two nurses looked at each other in horror and left the room.......and that was the end of the rehab program.
What I'm getting at is: if she had agreed to that program, at the end of it they would have looked for a place for her to go to and I wouldn't be burdened with having her here in my home. She was discharged at the end of that day and because her dr. said she could not live alone any more, yet didn't have a referral to a care facility (nor would she pay to go to one!) it was left to me - the only family member with a house big enough to accomodate her - to take her in.
So here I am, just like the others on all the threads on here, trying to do the right thing and be a good guy, but at the expense of my own rapidly disappearing life.
Wish I 'd had it when Mom was under our roof!
It's SO hard to prevent one's own mind and emotions from "taking it personally", when elders act-out...only some easier if caregiving for non-relatives.
Even knowing why they are acting out.
Even without dementias, elders who have lost much, are increasingly limited in their own abilities, tend to act out more, get tired easier
[[we used to call this "crabby baby syndrome" where I used to work
--little kids get that way, too, when their minds can think things their bodies cannot keep up with, and they wind-up and act-out when tired.. even normal working adults can get this way!]]
The less autonomy a person has, the greater the acting-out.
Adding in dementias or other disorders, only ups that ante.
I do not think anyone can truly handle these situations 24/7, alone, and preserve their own sanity and health.
Caregivers need "backup" and support systems too!
Please look for whatever is available in your community or county.
There is far more now days, than there ever....free.
Could start with Area Agency on Aging, and get suggestions from them.
SOME local pastors might also have suggestions.
Bottom line, if a caregiver is at their "last straw" point, cannot find help in that moment, and is about to completely fall apart, it is OK to call the local Suicide Prevention line [front of most phone books], and ask for some suggestions as to where to find support systems you need.
Make a phone list of the various agencies, so you can more easily call them to see what else they might have up their sleeves to help you, too. Things change over time; some of the people at agencies are better informed than others.
{{{hugs!}}}
Please speak w/your mother's doctor(s) about a review of ALL medications and drug interactions too. Your local pharmacist can be very helpful too in this regard Just pick a slow time @ the pharmacy to do this.
Lastly, please stick up for yourself and tell your mom as you would a little child that talking to someone that way or using hurtful comments IS NOT polite and will not be tolerated. Sometimes our parents need to be reminded to be polite as they sometimes get wrapped up in themselves and their aches and pains. It's almost as if when we age we revert to the " terrible twos" in our acts and behaviors! Maybe your mom needs a hug, kiss and I love you "timeout" too.
Best of luck to you.
Hugs,
Suzanne
I definitely think there are mental issues which have been exacerbated by her ageing so perhaps it's time for a meeting with her doctor? Thanks for listening, and hugs to you too!
Could be mixture of personality disorder and other mental health problems going on for which medication can help tremendously after a proper diagnosis.
Sorry you are going through this. Hugs.