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apharris Asked February 2013

How does one get through to family members, interfering in interactive care from visiting caregiver?

When family members cause chaos by interjecting, by constant telephone calls to patient who has mild stage dementia, giving opposing instructions and causing patient to be confused. What is the best way to ask them to stop.
They are also at time having the patient making decisions, as confused as patient is...the situation becomes even more confused....how does an expert operate under such stress?
Thank you
Apharris

cwillie Jan 2017
Jenjon, you are tagging onto the tail of a thread that was started four years ago so you may not get many responses.
My advice would be to visit a lawyer and have each one sent a formal letter detailing your dad's diagnosis, your family's plans for him and an admonition to cease all contact with your father without prior approval.

jenjon Jan 2017
I was caretaker for my father last year, and now it is my brother. My father moved to CO to be near my brother, as mom and I couldn't do it any longer (I live abroad and mom's aging). So my brother, his wife, my mom and myself are a team working to get my father who has Alzheimer's placed in skilled care. My brother has full POA and doctor has signed off that dad is ready to enter skilled care. However, we have my dad's brother and my dad's two buddies, who are all in denial and only listening to my dad's paranoia, i.e. that there's nothing wrong with him and we're stealing his money, etc. So my uncle and these fellows are giving my dad instructions behind our backs to go to the bank so that my uncle can take control of my dad's money. Then their plan is for my dad to escape without any of us "bad guys" knowing, back to Florida to buy the condo of the one friend!! I did write a normal email to this friend stating that dad has Alzheimer's and will not be moving. But these fellows are treating this as a "combat mission" and twist everything so that in their minds we the caretakers are just taking advantage of my dad. It's become INSANE and we're moving quickly with everything this week, i.e. QIT, social security control, pension, Medicaid application. Is THIS normal?? And, who can tell these fellows to cease making life more confusing and stressful for an Alzheimer's patient and his family?? Appreciate ANY advice!!

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BarbBrooklyn Dec 2016
Kiti, I think perhaps you need to start a new thread of your own. Go to the box that says "ask a question" and tell us your situation. You'll get good advice here.

Kitinkbootl Dec 2016
I am disturbed by the comment, "you all just have to get on the same page". Really? Wow, what a revaluation! My brother is a complete idiot and will NEVER get on the same page as the rest of us, yet he is the one that lives inthe town my parents are...he is impossible to reason with, he is hostile and he hates our mother...he will do everything in his power to make our lives miserable. So our only recourse is to cut him off he will not be allowed to go see our dad and I will get a restraining order against him if necessary. I have dealt with his verbal abuse for years and will not subject my mother or my dad to any more of his bullshit. So please do not say stupid things like that, since I can t force my idiot brother to come on board. Thank you for a useless attempt to help.

2donewithcrying Mar 2013
I have the opposite problem, the poa is not providing adequate care and no longer gives anyone an update on Mom's condition and has told us that she will not call us if Mom becomes ill or passes away.

BEACHES Mar 2013
I am one of 4 siblings. None at this time are helping with mom. My middle brother called one morning at 3am, asking to speak with mom. Now mind you, its difficult enough to get her to sleep and stay. Mom forgotten how to answer the phone, so for that I'm thankful. I simply use caller ID, and if anyone calling that going to further disrupt the house, that call simply isn't answered.

alabamaspitfire Mar 2013
Hold a family meeting and get everyone on the same page. If you are a professional you should be ready for this and trained to handle this.

joanie76 Mar 2013
dont get so emotionally involved. Go to your boss and follow protocol. I know it may sound cold but the family is family and you are an employee.

anonymous155170 Mar 2013
Be grateful they are at least calling, because as someone said in this thread, there are many of us that get little to no family involvement. I have 3 sisters and mom does not hear from them very often at all. When mom does she tells them about what she has been doing. When this occurs, I have 2 sisters that get jealous because mom is traveling, not in the cold and having fun when they are not. Instead of them being happy for mom, they get jealous.

What I would recommend is writing them all an email giving them some guidelines to follow.

Email has helped my situation a bit more at times. My youngest sister, who has jumped in my corner and promised not to get upset with me or give me a hard time about mom asked that I send emails out every so often about how good or bad things are going with mom.

So now every couple of days, I send out an email about what mom, how her behavior is, what we have done and are going to do in the upcoming days. At the end of the emails, I always remind them that mom loves to hear from them.

The interesting thing is that my one sister that would call every 6 weeks is now calling once about every 3 weeks to talk with mom. I consider this a very big plus.

So try emails and see if you bring some calmness to the situation, but be grateful they are talking to your mom.

papadoc Mar 2013
There is no expert way to handle this because there is nobody who is an expertise in your family. And your family will be different than others.

Bottom line, I wouldn't spend a lot of time trying to educate people in order to try and get them to quit. Just tell them that while you still need their calls, when multiple people are giving directions or getting them to make decisions, it causes confusions and problems for you, and it needs to stop. If they stop calling or get mad, well then that's just the way it is. As one of my brothers told me when he was dictating how Dad's schedule would run, he said, "We're all in this as equal partners." Well, that's not true. The non caregivers may all be equal in their relationship status to the parent or in the will, but they are not all equal partners in the caregiving and the day to day operations. And sometimes they just need to hear that.

That said, we all assume here that the writer of the question or the caregiver is always the aggrieved party and all the other siblings just need to quit causing the problem. In some cases however, other siblings may not feel that decisions are being reached that need to be reached. If there are decisions that need to be made that haven't been made, particularly important ones such as executors, power of attorney, or other matters that legitimately require attention, then I suggest that you come up with a way that everyone can bring up these issues and resolve them jointly instead of bombarding the parent with conflicting information and opinions.

alwayslearning Mar 2013
Or just do an email group that keeps everyone informed of each event : then people can see for themselves how the dynamic works!

Chicago1954 Mar 2013
In my Mother's situation, we had a Chicken Little situation going on, where my sister's friend would visit Mother. Then, she would call my sister with some dire prediction. Then, my sister would call me and change the message a little and so on.
My sister and I are both several states away from my mother. One lady even called and said "Mother had a week to live."

It is truly enough to drive you crazy. I finally told them that we hear from Mother's POA and one other person that has written permission to talk to the doctor. The calls have subsided somewhat, but you do have to "take the bull by the horns."

alwayslearning Mar 2013
You know, there are many other strings on this forum complaining about family members who never call, never try to contribute, aren't involved. So here at least are people who are trying to be involved. You guys have got to get on the same page, is all -- they need more information as people have already said. Report clear clean information about what is going on, including reports like "...was confused and agitated after the phone call because didn't know how to deal with conflicting instructions" and followed up with invitations like "so let's decide together what instructions to give...." Start by agreeing on everyone being on the same email group. Having them all butt out or jump off a cliff would remove the task of communicating and collaborating, sure, but is "get this person's whole family to just back away from her" really what you want for the patient?

3pinkroses Mar 2013
I agree with above posts. Telephone calls can be most unsettling to a patient with dementia/alz. and can cause great confusion. That was my experience anyway with my MIL when she lived with us. And as the disease progresses, it only gets worse.

My MIL would get so confused when certain people called - reminding her of her home she no longer lived in, etc. We simply told them sending cards would be better and judging by how my MIL was doing - she would call them. This worked much better for her as it is a day by day disease - one day better than another. And when we were given unsolicited advice - I told them we knew what was best for her as we were there 24/7 as her caretakers.

AgingHelen123 Mar 2013
I agree with Caregiver52 -- provide the interfering family members with information on Alzheimers/dementia -- but also provide them with suggestions on how they can be helpful that are more appropriate. If phone calls are disruptive, for example, send cards, flowers, photographs of family members.

ejbunicorn Mar 2013
Do you have power of attorney? If you do then you can stop the harrasement that is causing her to be upset, refuse to take the calls and if they continue, place a restraining order inorder to protect her from any hard, will keep you in my prayers, hugs

caregiver52 Feb 2013
I had the same problem before too, I decided to ignore my sibling phone calls who was causing chaos and told them like it is. and from there they never call me since. ( no stress now ) for me to explain to them and they did not understand what a dementia really meant.They think it is just a mild forgetful thing but not realizing the real truth,, Just send them some information about dementia on a website...or let them see a specialist who can explain to them what they need to learn and understand about what a caregiver has to go through with a dementia person and all the stages that they will go thru...I know family is hard to get along sometime ..just tell them you love them all but they don't have the right to make a decision and confuse the patient....only you can if you have the power of attorney

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