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Why are caregivers told to let the hurtful words and sometimes violence told to let it roll off your back?
gubblebumm
Posted: Wednesday, December 20, 2017 9:56 AM
Joined: 7/12/2017
Posts: 1334


Before we all get nuts, I am NOT equating ALZ/Dementia with what I am sharing below, however the results can often be similar for the caregiver.

Was looking at a poster on another forum, and his comment was that as caregivers, people need to ignore the hurtful words, suck it up, take it, its not personal, its not about the caregiver.  That gave me pause.  Would we tell an abused wife, child, the same thing?  Regardless the source, the words are hurtful, mean, hitting is wrong, throwing things is wrong.  People are told hey, its the disease, just don't do anything to aggrievate the person. Would we tell another person dealing with the same actions to just take it, supress you emotions and feeling in the moment and in your life?  We are lucky, we can vent, share, cry, etc here.  Not sure I have an answer here, its just his words felt dismissive to me, like you just have to take it, be strong, and that to me denies the reality of so many lives dealing with this nightmare.  I myself, am doing fine so far, but I won't take abuse.  And I won't tell other to just take it either, there has to be another way, and if we don't have it yet, we need to fight to get it for the millions who will be dealing with this in just a few years, as we age and live for far too long


kellly
Posted: Wednesday, December 20, 2017 10:05 AM
Joined: 6/12/2015
Posts: 1131


Gubblebumm, THANK YOU!!!! I have tried saying this in other ways. Violence is wrong. Abuse is wrong. I don't care if it's someone with AD. A caregiver, as much as anyone else, has the RIGHT to be safe in their own home, their car, or visiting a LO in a facility. It's not ok to suffer someone else's abuse, particularly someone who is dependent on YOU for THEIR well-being! I don't care that their brain is diseased. A caregiver has the right to be as safe as the person they are caring for. 

And in fact, yes, abused spouses have often been religiously counselled to become "a better wife" to avoid being beaten. It's been "blame the victim" all they way down. Enlightenment about domestic abuse issues is coming .... slowly..... very slowly.

As for why caregivers are told to "let it roll off your back", it's because how else are you going to continue moving forward if your feelings are hurt by how you are being treated? But doing this over a period of time makes you an expert at dissociation and dysfunction. I expect needing therapy would be the next suggestion over how to deal with that. 


beaverdams
Posted: Wednesday, December 20, 2017 11:54 AM
Joined: 10/29/2016
Posts: 249


What part of Alzheimer's patients have damaged brains don't you understand?  My Wife did not recognize her toilet and what she was supposed to do when I put her on it.  She could not hold telephone or speak to right part.  She could not eat by herself.  She could walk 10-12-15 hours a night as directed by her damaged brain and also destroyed my ability to sleep.

   Caregivers must learn to step aside and let somebody else take charge before they get hurt one or another by their loved one.  My weight had slipped down to 128 lbs trying to take care of my Wife from a normal 150-155 lb range.

   My Wife--a retired school teacher and Mother of our 3 children---was always a pleasant and friendly person---and even the aides at the facility loved and respected her so we had no hurtful words.  She did resist showers and baths and we would see resistance during those times.

   I accepted when she could not recognize me and she thought I was her deceased Father at times.  I kept her out of facilities for 3 1/2 years but yielded when I could no longer accept her wanderings nor jeopardize my own health.  I did not let Alzheimer's take 2 lives---nor should any caregiver.  


Iris L.
Posted: Wednesday, December 20, 2017 12:24 PM
Joined: 12/15/2011
Posts: 16199


Gubblebumm, despite what you read on another forum, in all the years I have been on this board, caregivers have always been told to look after themselves, and not to let the disease take down the two of them.  I think the interpretation of that statement is not to let what the confused mind says affect the caregiver personally.  If and when the words and the actions become intolerable, and actually, there should be a plan from before that time, go to Plan B.  Find a solution.  Consult the dementia specialist, bring in other caregivers, or consider placement in a facility that is more equipped to handle what the caregiver is confronting.  No, the caregiver should not let violence roll off the back.       


Speaking as a patient, sometimes I have dreams in which I act vastly differently from how I act in real life.  When I awaken, I wonder how that could be.  If I were to verbalize what was in my dreams, someone would say that it is hurtful.  I can say myself that my dreams are hurtful to me.  But I have learned to figure out why I have hurtful dreams and not to beat myself up about them, even though they are so disturbing.


Gubblebumm, if you are in this situation, post here or call the Care Consultant at the Hotline for support.  Go to Plan B.  Find a solution.  YOU DO NOT HAVE TO LIVE IN AN INTOLERABLE SITUATION.  Caregiving is difficult, but it does not have to be intolerable.


Best wishes to you, Gubblebumm.


Iris L.


Hawaiigirl21
Posted: Wednesday, December 20, 2017 12:30 PM
Joined: 3/24/2017
Posts: 273


I totally agree with you. Since I moved back home to take care of mom with Alzheimer's -- a decision I regret -- the cops have been called around five times. The first because she assaulted me. In addition to physical violence, she yells "SOB" "Whore" "Get the Hell out of Here."

I am at a point where I don't care that she has a disease. I wish she would die quicker and so I can be free of her! I know that's going to shock some people, but that is how I feel.

I am in the legal process to make the Hawaii Office of Public Guardian her legal guardian. I thought by doing that I would have her off my hands, but I got bad news. They told me it would take "months" to place her and it depends on finances.

They want her to continue living with me while they figure it out. How is it that a Petitioner who says she is not willing nor able to care for this woman...how is it that they bounce her back on me!! What am I paying the lawyers for? Why am I spending all this time, energy and money!

I can't work with her around. I will not be able to pay the rent and we will all end up homeless. How is that best for everyone.

I am stuck! My husband and I wanted to just leave her and go back to France, but I would go to jail for abandonment. 

In my situation, it's not just the disease that is horrible but that this woman is horrible.


Sayra
Posted: Wednesday, December 20, 2017 12:37 PM
Joined: 8/10/2016
Posts: 1764


I have some understanding of this.  I thought I could put up with the mental part of this as long as it didn't become physical.  In the end I could not.  I did live with it around 13 years.  I don't feel I ever took anything personal but at the same time I could no longer tolerate someone who's brain is broken trying to control my every move.  Bless her heart she is still trying even though I have moved out of my home.  I so far have been able to kindly say I'm not doing that.  I am going to do what I can with some distance between us.  One day at a time.  If she becomes unable to live there then we will move forward one day at a time.  Do I feel guilty yes.  I have to remind myself  of the events that lead up to this.  Thankful for how the way has been paved for me so far.  Trusting that whatever is best will happen.  I've done the best I can to be a good daughter.  Maybe I should be a little more stronger willed, i don't know..that's not my nature though and I hate arguing.  Trying to always avoid an argument after 13 years becomes wearisome.

Take care everyone, Sara


citydock2000
Posted: Wednesday, December 20, 2017 3:24 PM
Joined: 9/7/2017
Posts: 797


I think a more constructive, productive perspective is to think about it like - caregivers, should they choose to assume that role, are responsible for managing the PWD's care and for understanding what is the most effective and productive course of action within a given situation or individual interaction.  

My FIL with dementia was unkind to my MIL. She didn't interact with him effectively, and as a result, this escalated many situations and he would become combative.  It wasn't working for her as a caregiver, and we made other arrangements for his care, so that when an interaction wasn't going well, she could remove herself.  

I don't know if she should or shouldn't have been subjected to that "abuse" or even if I would call it abuse, but - it doesn't even matter and it wasn't up for me to decide that she needed to endure it or let it roll off her back. She wasn't able to respond in a way that would deescalate the situation - and he wasn't going to change. We had moments of "blaming" her but at the end of the day, she wasn't able to adjust and he obviously wasn't able to adjust.  To tell him to stop calling her fat or stop telling her he never loved her (both very hot button issues for her) would have been like telling the wind to stop blowing. Was he always like this or was it the disease?  Who knows and it was futile to spend much time on it. We ended up where we ended up in the situation we ended up in - and we addressed it. 

We would not accept blaming from professional hired caregivers, but if a caregiver didn't mix well with the PWD, we would make alternative arrangements.  Same with a family member caregiver - sometimes it's just the bad mix.  The type of behaviors (calling my MIL fat and saying he never loved her - these were VERY upsetting to my MIL because she had been sensitive about her weight and his love for her her whole life, these things were NEVER talked about and when his filters came off, it it was too upsetting for her).  Did he never love her? Did he think she was fat?  Who knows? The fact was, it rendered her incapable of interacting with him effectively and negatively affected her health (stress, depression). 

I think the shame of not being able to manage a PWD keeps many people in place when its dangerous for both/one of them. If the situation becomes unhealthy for the caregiver, then the situation needs to be altered to make it safe (mentally, physically).  No one else can make that decision - sometimes its just a bad mix for a million different reasons. 

 

 

 


kellly
Posted: Wednesday, December 20, 2017 3:41 PM
Joined: 6/12/2015
Posts: 1131


citydock2000, it's true there are other ways to handle a situation where the caregiver is being abused and the situation isn't going to change, but a lot of people don't have the resources to employ outside help or to relocate the PWD in a care facility. That's not the same as promising a LO that they'll "never have to go to a facility" only to find out it's too much to handle at home. It's finding out you'll lose everything you've worked your entire life for in order to support someone who's been abusive to you in your caregiving efforts and then if you need resources later in life for your own care, too bad. You're bankrupt now.
citydock2000
Posted: Wednesday, December 20, 2017 4:05 PM
Joined: 9/7/2017
Posts: 797


I totally hear what you're saying, Kellly.  There is, of course, always an option to walk away - we've heard from Cordell Garrett and from HawaiiGirl, who both made alternate arrangements when they couldn't stay involved bc of what they perceive as abuse, that didn't involve their own financial involvement. 

Every caregiver has to make their own choices - and I wouldn't blame anyone for those choices unless they include blaming the PWD, or fighting back, or arguing, and acting like that's a reasonable solution or response to an "abusive" PWD.  Saying he's abusive to me so he deserves _________, is not a productive response to this disease. Trying to parse out whats the disease and what isn't is not a productive response to the disease.  Either you can stick with it as a primary, or secondary caregiver, or you can't.  Either of those is a valid choice. Family caregiving is not a requirement, by any means. No one should have to promise anything, since this disease will take many unpredictable turns for most of us. I believe most people do the best they can with what they have - not all of us can give the same amount at any given time. 

My FIL took swings at me, swore at me, called me terrible names, accused us of stealing from him, threatened us and it never really bothered us once we got used to the new normal.  But I can see how it's just not tenable for some caregivers. I totally get it. I guess the answer is that each person has to decide what is doable for themselves, and I wouldn't judge someone for their choices. A mile in their shoes and all that. 

 


kellly
Posted: Wednesday, December 20, 2017 4:12 PM
Joined: 6/12/2015
Posts: 1131


Cordell was caring for his grandmother, and had no financial obligations to her. Children are not financially obligated to support their parents, either, but spouses are expected and legally required to support their spouse even if it means liquidating assets that were in one person's name only unless they live in a state where it's not community property and/or can pay for a good lawyer. That makes it an entirely different situation, because if one spouse has dementia, and the other is the care giver, some of the community assets are required to be liquidated in order to provide for care. And likely the person without dementia will outlive the PWD, and if that person needs care later on, the assets were used up caring for the PWD. There are no allowances for "what happens in 10 years if I get sick?" It's just assumed that the one spouse should give everything up in order to support the PWD. Some people keep their LO at home because they can't afford the fees for any other outside care.
Peter5
Posted: Wednesday, December 20, 2017 4:23 PM
Joined: 5/30/2013
Posts: 1129


I have expressed this opinion before on this forum, and its not a popular one, but I think caregivers wait too long to explore drugs that might help their loved ones aggression and behavior issues.  Redirection and other methods can only go so far.  

Its not easy to find the right drug/drugs that might help.  You have to have a doctor who has specialized training in prescribing these.  It can often take weeks to see how something is going to work; and if it doesn't you have to try something else.  At the beginning, they can make our loved ones extra groggy, so we stop because we don't want to further impair them, when what we really need to do is give their bodies time to adjust.  

My wife was exhausting herself every day with the agitation and aggression.  I didn't realize until we had her regulated on drugs to help, how much relief it brought to her; not just me.  

The other thing is that most of our loved ones don't stay in this stage, and can be weaned off the drugs after a while.  


Hawaiigirl21
Posted: Wednesday, December 20, 2017 4:41 PM
Joined: 3/24/2017
Posts: 273


Hmmm. My geriatrican gives my mom Seroquel for her violent tendencies. It doesn't work that great. I wish there was a miracle pill to keep her from getting violent, but it doesn't exist.

Also, police cars coming because of an assault is a reality. Not a "perceived" abuse. 

I am not walking away. I am already gone. People on the forum was aghast when I told them I quit my job in Los Angeles to move to Hawaii to take care of mom because they knew what I was in for.

So, you want to pay our rent so we don't go homeless because I can't work with her around?

Then, please, really, truly try to walk in my shoes.


kellly
Posted: Wednesday, December 20, 2017 4:49 PM
Joined: 6/12/2015
Posts: 1131


citydock, for some people it's financial restrictions, not "shame of not being able to handle a PWD" that forces some caregivers to keep the PWD at home. And like Hawaiigirl said, having the police out because of an assault as both she and Cordell and the caregiver(s) before Cordell have had to do is not "perceived abuse" - it's assault. If someone knocked you down and kicked you and broke your ribs and stole your wallet, would that be "perceived abuse" too? Walk a mile means you have to have understanding of what someone else is going through - real understanding of what it means to become bankrupt in order to maintain a LO in a care facility or be hospitalized for some kind of trauma because of some kind of violence-caused injury. Not everybody has an easy go of it.
Valencia
Posted: Wednesday, December 20, 2017 7:09 PM
Joined: 11/11/2017
Posts: 194


Gubblebumm, I have to admit that the hardest part of care giving for my mother is when she has an anger spell and says mean things. I try to ignore it like I am told to do. But mean words sting. I can accept the night wanderings and early morning wake up calls a lot better than the anger spells with mean words and accusations. WHEN she was at AL, I visited her every day but I always left when she became unbearably vocal. NOW I can't run away from home when she says mean things. I am the full time care giver. On the other hand, her sweet moments have such a childlike innocence that I quickly recover and all I want to do is protect her and care for her. But the stinging words are not easily forgotten. So I understand what you are trying to say.
TheirLittleGirl
Posted: Wednesday, December 20, 2017 7:24 PM
Joined: 12/23/2016
Posts: 56


Here's my take...if we take on the role as a caregiver for a LO with Alz/dementia then we have no right to play the "victim" when the going gets tough. We knew what we signed up for when we took on the assignment and if we DIDN'T know what we signed up for then shame on us for not doing our due diligence. If it gets to be too much for whatever reason then move on to Plan B. Everyone needs to vent and talk to people that can relate to their situation when caring for a LO with this horrific disease but actually believing that somehow you're the victim in all of this is an incredibly selfish stance to take. Our LO's didn't ask for this. We certainly didn't ask for this...yet here we are...and God forbid you're the one with Alz/ dementia some day with no one willing to lovingly help you thru this terminal illness.

 


punkie228
Posted: Wednesday, December 20, 2017 8:07 PM
Joined: 10/22/2016
Posts: 81


Because I choose to care for my Mom I know it will be hard and I accept that my life will change.. These are the people we love and we choose to be part of this struggle but I do not accept we have to accept abuse or that we do not have a right to feel hurt by their words or actions..... Our jobs as caregivers is to find the solution to make our LO life the best it can be on this journey  We need to seek tools to help and demand that doctors provide us support and that family shares in the burden...

This disease creates a world where fear , confusion and anxiety are always present  where our LO has lost all sense of self ,balance and control.   I understand the frustration but much like my children when they were 2  years old I understand your frustration but need to help you manage how you act out .....that for me is the key how do we help manage the acting out.  I use the 3 As

1) Attitude.. meaning they deserve to be treated with an attitude of kindness and support

2) Access..meaning access to a safe space and a calm environment

3) antipsychotics/anti-anxiety meds...find the right pharmaceutical and the right dosage regime for your LO ( it will be unique)

Abusive and aggressive behavior are symptoms of this disease but they do not need to be  a permanent part of behavior .  They should be managed for the safety of the LO and all those who love them.

Now , I want to respond to those who indicate we should accept behavior and have no right to be hurt.  That is an unacceptable attitude no one especially someone who is making daily sacrifice for another deserves to be abused or should just SUCK IT UP.   Caregivers are angels in human form our hearts are caring and full of love  we feel strongly  both the negative and the positive of this journey.  You never have a right to tell someone they do not have a right to feel hurt when they are working so hard on the front lines.  I tell each of you , YOU have a right to feel hurt, angry at the disease ( not the person), mad at the circumstances ( not the person)  your feelings are valid and you need to feel them and accept that the hurt is unfortunately a part of this journey..do not let it build up feel it and deal with it.

Deal with the issues that are causing hurt for  our loved one and deal with the issues that are causing  hurt for you. You will feel better about yourself and create a better journey for your LO if you refuse to let abuse be part of this journey...seek the solution that makes it better for both of you and do not stop seeking until your LO finds peace

Bless all of you on this journey may you find the joy that does exist on this journey and be able to let go of the hurt that is also encountered


GemsWinner12
Posted: Wednesday, December 20, 2017 9:31 PM
Joined: 7/17/2017
Posts: 389


Beautiful Hawaii Girl, 

I understand where you are coming from!! Especially since I've been a registered nurse for over 20 years, and my Mom is currently very agitated with her caregivers in her memory care facility.  I work very closely with her nurse practitioner to protect other residents and the caregivers' safety.  

When I became an RN, I never knew that it was just like, "oh well" when patients would say and behave abusively towards me, and I had to just take it because " they're sick they don't know what they're doing".  I've had patients hit me, spit on me, cough in my face, call me every name under the sun, tell lies about me to their family members and other caregivers...on and on....   With family members I would say " well I won't hold it against you what she told Me about You if you agree within reason to do the same)) . Upbeat and with a smile of course))

When my mom's caregivers tell me about other resident's family members refusing to have a patient medicated in order to curtail abusive behavior, it really gets to me!!  I would love to make those very family members spend a day in the caregiver's shoes, being abused, physically and mentally, and see how that works out!!  How would they like to wipe a person's behind and be yelled at and hit?  No, it's NOT ok!!  And, you would never know that this would happen until you took on the job and it started to happen!!  You didn't know!!  The patient (your family member) is not unlike a trapped child, not understanding what is happening.  They need medication in many cases to mute all the sounds, smells, and feelings that are so out of their control.  

I'm on your side; I understand.  


citydock2000
Posted: Wednesday, December 20, 2017 9:33 PM
Joined: 9/7/2017
Posts: 797


Sorry guys, I stand corrected, my responses were obviously not helpful. Never my intention to make anyone feel bad or criticized about their choices.
LastFire
Posted: Wednesday, December 20, 2017 9:57 PM
Joined: 2/26/2017
Posts: 159


HawaiiGirl and others - My DH was never been abusive to me.  He never called me names.  However, his behavior became uncivilized to the max.  I would rather not ever describe his behaviors.  He was a good man when he was well.  However, after years of seeing/hearing his over the top filthy habits (and the isolation), I was the edge of becoming a subhuman like him.  I was so lonely and he was the only one there.  Was that emotional abuse?  How do you label yourself when you just don't care anymore.  I feel like the disease abused me/changed me/stripped away my dignity as a good human.  So, he is in memory care.  He is being medicated so that he will not bother other residents.  We will run out of money within a couple of years.  I never worked outside the home.  I have nothing.  What I do have is two years of living as a civilized human before the money runs out.   I will gladly go on medicaid if I ever need care.  Whatever you and anyone decides is GREAT....no judgement from me.  I would help any person on this forum personally if I could.  There is no right or wrong here.  I will make sure my husband is safe (and others around him are safe).  Abuse comes in all forms.  I am not sure I have made my point:  Please be kind to YOURSELF.
Hawaiigirl21
Posted: Wednesday, December 20, 2017 9:59 PM
Joined: 3/24/2017
Posts: 273


Thank you Gemswinner12 for your post and your understanding. I had a friend who used to be a nurse to patients with dementia. She had to get out of it because she said she had things thrown at her, patients swearing at her, and every abuse imaginable. She told me to be strong when I told her that I had to go back to Hawaii because mom has dementia. Little did I know it would be a never ending hell for me. I didn't even know what dementia and Alzheimer's were. I had to do research and call up the Alzheimer's association. 

I'm really afraid of what happens after the February 7 hearing at Family Court. I assume the judge will rule in my favor and make mom a ward of the State. The only thing is...will the Hawaii Office of Public Guardian hold up their end and place my mom?

How long will all this take? We got to go to another apartment because mom got us kicked out of this place since she called the cops on us and brought the police, among other things. What if we get kicked out of the next apartment because of her outbursts.

What if a year passes and she is still with us? What then? 

In Hawaii, they are building an "artist loft" where rent will be only $500 for a one-bedroom. That is insanely cheap in Hawaii. A decent one bedroom goes for $1,800 and up. This loft, which is bigger than your usual one-bedroom because it includes an artist's work space, will be done by end of 2018.

As a screenwriter, it is our hope and dream to get this loft. You have to go through a selection process. What if she still is not placed and then, poof, another dream is gone.

Sad and dreary in sunny Hawaii


GemsWinner12
Posted: Wednesday, December 20, 2017 9:59 PM
Joined: 7/17/2017
Posts: 389


seroquel, rispiridone, and flexaril (for her droopy neck and pain) have helped a lot for my mom and her caregivers, and the other residents!!  Call it a restraint or whatever you want, but I call it keeping caregivers and other residents safe, and keeping my mom from getting kicked out of her memory care facility!!!  

Of course, the caregivers are gentle in approach and in touching her (they tell her and then gently start cleaning her or whatever).  That is part of the issue as well, and I believe her caregivers truly do their best to do so.  I have seen them with her, spent many hours with them, and know her caregivers personally.  


GemsWinner12
Posted: Wednesday, December 20, 2017 10:21 PM
Joined: 7/17/2017
Posts: 389


Beautiful Hawaii Girl, 

Can you just move the phone to a place where she can't get to it?  She doesn't have the sense to call anyone, let alone the police, for anything anymore.  I would perhaps think of her as a severely mentally compromised adult  (which she is).  She can still dial a telephone (which I take it to mean she is in the middle stages), which also is a downer for you.  My mom used to call me at work (I am an RN, used to work nights), in the middle of the night to talk about nothing .  It was embarrassing.  That was before I even realized that she really did have alzheimer's . Try different/ more medications.  It's not a "one size fits all".  

I believe in you and I know you can do it!! Please let me/us know if you have more questions.  I would be happy to chat with you anytime, day or night.  I'm a night owl)) My mom was an English Professor at UOG (university of Guam) . She was an artist, musician, brilliant financial genius, and terrible mother.  


ruthmendez
Posted: Wednesday, December 20, 2017 10:23 PM
Joined: 9/8/2017
Posts: 2146


gubblebumm wrote:

we need to fight to get it for the millions who will be dealing with this in just a few years, as we age and live for far too long


 
I agree.  When I first became aware that my father had dementia, I just thought it was going to be a regular slow age related process and not severe memory loss.  I was in denial.   However, I now realize it's much worse than that.  When he got lost for 14 hours in 2015, that was when I had to do something more than just feel relieved that his estate planning was already worked out and selected POA.
I don't know if I was just ignorant, or immature, or what.  But now going through this, I realize many people, like me, are not well informed or educated about the impact this disease is to everyone involved.  I hope for all of us participating in this forum, that we become the educators to those around us who are not aware of what this disease is really like.  I thank this forum, that is open to many around the world and we are all learning so much and trying to help each other by sharing our experiences.
This disease has made me take a good look at myself as a person.  My faults, my failures, my patience, my ignorance, my temper, and trying to be loving has never been easy for me.  We were not brought up that way in my family-at all.  So yeah, for me, this disease has tested me, and continues to do so.  It is hard. But I'm still staying strong.  But after this, I'm not sure if I'll still have that energy.  I'm getting old.  

 

 


GemsWinner12
Posted: Wednesday, December 20, 2017 10:44 PM
Joined: 7/17/2017
Posts: 389


Beautiful Hawaii Girl, 

Can you just move the phone to a place where she can't get to it?  She doesn't have the sense to call anyone, let alone the police, for anything anymore.  I would perhaps think of her as a severely mentally compromised adult  (which she is).  She can still dial a telephone (which I take it to mean she is in the middle stages), which also is a downer for you.  My mom used to call me at work (I am an RN, used to work nights), in the middle of the night to talk about nothing .  It was embarrassing.  That was before I even realized that she really did have alzheimer's . Try different/ more medications.  It's not a "one size fits all".  

I believe in you and I know you can do it!! Please let me/us know if you have more questions.  I would be happy to chat with you anytime, day or night.  I'm a night owl)) My mom was an English Professor at UOG (university of Guam) . She was an artist, musician, brilliant financial genius, and terrible mother.  


Hawaiigirl21
Posted: Wednesday, December 20, 2017 11:15 PM
Joined: 3/24/2017
Posts: 273


Thanks Gemswinner 12: The geriatrician told us to take away her phone so she doesn't call the police anymore. I took away her phone but she asks about it. I say yes we'll look into it but just keep putting it off. 

The geriatrician also made a house call because mom didn't want to go see the doctor. Says there is nothing wrong with her. Since that date, the doc hasn't adjusted her medication.

Thanks for your generous offer. I will take you up on it, and come knocking.

God Bless,

Hawaiigirl

 


Hawaiigirl21
Posted: Wednesday, December 20, 2017 11:33 PM
Joined: 3/24/2017
Posts: 273


citydock - no need to apologize. You didn't offend me. I wish you peace in this difficult journey.

Lastfire - Thank you. Good advice. I will try to take care of myself, but it's hard to do. My face shows it. 


GemsWinner12
Posted: Wednesday, December 20, 2017 11:48 PM
Joined: 7/17/2017
Posts: 389


Please get another MD (or the same one if you have to)  to come to your place in the late afternoon to check on your mom ( you simply cannot accommodate any other times for an appointment, sorry.) . She really does seem to need a med change and if that goofball MD won't do it, then.... NEXT!!!  We all get at least two or three estimates for routine issues; this is quite a bit more important!
kellly
Posted: Thursday, December 21, 2017 8:49 AM
Joined: 6/12/2015
Posts: 1131


I think that getting informed and having some idea of things to expect is helpful in any situation. Problem with dementia is that no matter how well prepared you think you are, sometimes the PWD will come up with something completely new and different and you had no idea what was coming. Being prepared also means having a fairly comfortable financial nest egg or other financial resources to draw on when you need to fix essential things that get broken, or pay for emergency intervention in some unexpected situation. Not many people have all those resources easily at hand, or might have them short-term but after drawing on them over a period of time they get depleted and it's impossible to replenish them because all focus is on getting by day by day.. Every case is different and so many unexpected things happen. Caregivers can anticipate the possibility of their LO becoming argumentative or even aggressive but maybe in the beginning it happens once and then doesn't happen again, or suddenly the LO sees the caregiver as the enemy and starts behaving accordingly. You can be informed and have contingency plans but you can't foresee everything. And it's one thing to be prepared to handle it theoretically but when a thrown object narrowly misses smashing you in the head, it might make the theoretical plans fly right out the window. You can learn and plan for it but you won't really know what your own unique experience is like until you're up to your eyeballs in it. You don't know how many years you will be caregiving. You don't know how fast any resources you have on day 1 will run out and how much more time you will still be needing resources that have now been used up. Being informed helps but nobody has a crystal ball. You can only do the best you can for as long as you can manage it and hope that it's enough. For some, it will be, for others it won't be. How can you have a reliable Plan B when all your resources (financial, family, emotional, psychological) have been all used up?

Michael Ellenbogen
Posted: Thursday, December 21, 2017 9:16 AM
Joined: 11/30/2011
Posts: 2679


I briefly looked at this and I find it very sad as people still think this way. 


jfkoc
Posted: Thursday, December 21, 2017 10:23 AM
Joined: 12/4/2011
Posts: 17560


I am sad with Michael that anyone has gotten the idea that all abuse must be tolerated.

I do not remember any post that says that all "abuse" must be tolerated. Quite the opposite is posted. 

Caregiver safety is extremely important. Support and information is alway given to help those living with other kinds of difficult behavior as well. 

We have come a long way from the place where drugs were the first choice. Non-medical solutions have proven to be extremely effective as first line care. That is why training is so important whether our loved one is at home with us or in a facility. 

The position of caregiver is one of enormous responsibility....overwhelming at times and a position not always chosen but assigned by default. 

All we can do is the best we can with the education and resources we have. Resources may next to nothing when we start this journey and may dwindle  but education can always increase. that is why the support and information shared here is invaluable.

I thank all who are here and also those who came before me for their sharing. I know my "best" was a lot better because of being here.


beaverdams
Posted: Thursday, December 21, 2017 10:29 AM
Joined: 10/29/2016
Posts: 249


Kelly:  Your profile reveals you are working and younger than most caregivers.  You seem to be very anxious about going bankrupt and it appears you should be talking to either an eldercare attorney or learning to say NO to much of what our American marketplace suggests we purchase---especially this time of the year.  Yes you will have a spend down of jointly owned assets--be they bank accounts---jointly owned property---jointly owned investments---unless an Attorney devises ways to preserve some of them.

   My Wife and I had jointly owned real estate and some IRAs and I sold the real estate and paid her nursing home bill with HER share of the proceeds before and after she passed.

   You probably read that Medicaid requires the spend down of only your loved one's assets and not yours.  If a caregiver goes bankrupt(which has never happened in this forum), I feel it is only because they chose to live beyond their means.

   The choice is yours---live within your means or go bankrupt.

 


Hawaiigirl21
Posted: Thursday, December 21, 2017 12:55 PM
Joined: 3/24/2017
Posts: 273


Hhhmmmmm. I don't feel that is a very supportive stance scolding someone about their financial fears and insinuating that she's a dimwit that can't manage her finances.

I have both parents with dementia. One is in hospice and one is with me. I just submitted a Medicaid application for my step-dad who is in hospice. My fear is that if it's rejected, then now what? My mom doesn't have money to continue his stay in the nursing home. I certainly don't have it since I'm currently unemployed. And even if I did, I wouldn't be able to afford $10K a month. If hospice drops him again, then they would say tough and we'd have to bring him to the one-bedroom apartment we're renting. And there are already three of us!

Then, on my mom's side. There's the question of rent, food, etc and wondering when the money from the condo fire insurance is going to run out. On top of that, the attorney's fee. Who knows how long the legal process is going to take.

I don't see how an elder lawyer is going to help me at this point.

Don't see her going to Tiffany's and blowing her money there for Christmas.


TayB4
Posted: Thursday, December 21, 2017 1:44 PM
Joined: 8/8/2014
Posts: 830


Beaverdams,

Those of us with a spouse with EOAD have lost probably 20-30 years of income from our spouses, which those who get the disease later in life have been able to save and invest. Our spouses are losing their jobs while we are trying to support our children coming of age and going to college.  My husband is 51 and has been unable to work for four years. You have said no one on these boards has ever gone bankrupt.  Not true - I am bankrupt. People just don't talk about it. Please don't scold us because we go bankrupt while caring for our spouse. It is mean spirited, and doesn't belong here where people come for support and constructive advice. 


​NorthWoods
Posted: Thursday, December 21, 2017 2:19 PM
Joined: 4/6/2016
Posts: 344


It is often said, “if you have met one person with dementia, you have met One person with dementia.”  I contend that the counterpart is also true- “If you have met one caregiver, you have met One caregiver.”  Some caregivers came to their roll willingly; some with eyes wide open. Some found themselves there unexpectedly and perhaps abruptly. Some caregivers are naturals, some struggle with the role. Some caregivers have extensive financial resources. Some live paycheck to paycheck. Some caregivers are caring for the love of their lives, some are caring for virtual strangers.  No one of has ever walked in anyone’s  shoes but their own.

To the original post, my belief is that if you feel abused you are in an unhealthy space and need to address it in whatever way you best can. If you feel unsafe -get out and get help.  It does not matter the source, the legal definition, or anyone else’s opinion. If you feel it, it is real and you must acknowledge it and address it. 

Sadly, there are no magic answers. What resources, services, and options are available depends on where the caregiver is -physically, emotionally, geographically, financially, legally, and within their own ethos. 

Be kind to yourselves, and to each other.


beaverdams
Posted: Thursday, December 21, 2017 2:51 PM
Joined: 10/29/2016
Posts: 249


Northwoods:

   Well stated.  If the Alzheimer person handled the family's assets and budget(if any), then the caregiver/survivor must quickly get a crash course and make both routine and monumental financial decisions.  If the survivor's siblings or children are also not up to helping with the finances then the finances may quickly become jumbled/

   I asked my 3 daughters(all college trained) if they ever had any high school or college courses dealing with handling their paychecks when employed, and they all said NO.  One of my daughters went bankrupt and married a fellow who also went bankrupt.  In fact I had to pay her bankruptcy attorney.  

   I was raised in the 1930's and our family had virtually no money and  I received no financial help for my college so my family knew we had to have a coupon in order to go to a restaurant.  Both my Wife and I used the word NO many times.  I learned to stick bowling pins for money when I was in college.

   Sorry if I ruffled tail feathers but I have always tried to live our means despite many challenges.