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My father used to be my hero, we were extremely close, but that man no longer exists. He is aggressive, manipulative, verbally abusive, demanding, and obsessive. I am experiencing caregiver burnout while trying to deal with my own grief that the man who was my father no longer exists. Today I filled out pharmacy forms for him as POA, bought a new CD players for him and taught him how to use it, taught him for the third time how to use the remote control for his TV, and taught the staff, at his assisted living how to help him with his TV remote, I am taking him to the Cardiologist, and the Opthalmologist this week. Tonight he called me and threatened me with a lawyer and called me a liar, because I wouldn't let him have his wallet. (The care facility where he is does not allow valuables in his room.) I have not had a holiday in 18 months because I have been looking after my father. I am going on holidays soon but I fear he will try and sabotage my holiday, as that too is a recent behaviour pattern. Help! How do I set and maintain appropriate boundaries? How do I look after myself? How do I grieve the father that no longer exists?

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Your father is being looked after in an AL facility. You don't have to actually take care of him anymore. You don't have to take his calls either. Let them go to voicemail. If he starts off abusive delete it. Call him back if you want but you don't have to. You also don't have to take him to his doctor's appointents either. Hire a homecare aide to do that. If you want to actually be present at his doctor's appoitments the aide can video call with you at the appointment.
So in actuality you don't really have to do anything.
I am sorry for the pain and grief you are in and understand it. I did homecare for 25 years and now operate a homecare business. I've had many families in exactly the same grief you're in now and it's heart-breaking. Dementia took the loving father you knew. He is gone. What it left behind is a mean, aggressive, manipulative, demanding changeling in his place. It looks like him, sounds like him, has his same mannerisms. But it is not him. The man who was your father is not there anymore. So you can't be the daughter (or son) you were to him before dementia.
Having a wonderful and loving father was a gift. Remember that. You would not have such grief now if he wasn't a great dad before. Many of us here in this group (myself among them) did not come from loving and caring parents that raised us in good and proper homes. You clearly did. Treasure that.
It's time to let hired caregivers take over with your father. It's too hurtful for you to continue doing it.
I would recommend you find an Alzheimer's/dementia support group that meets in person. Talking to a therapist will also help you cope with the grief of having lost a person you love who is still alive. Good luck.
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You are grieving already. It's a horrible, tragic situation that our bodies outlive our brains. Try to remember that your dad is already gone, and the person in his place is brain damaged. As hurtful as it is to hear his words, that's not really him. When you take care of him the way you describe, it's part of the mourning process. You're doing this for the man he was. If it's too much sometimes, find another way to get him to his appointments. Limit the ways you try to help him, because you could explain how to use the remote 100 times, and he'll still forget. His brain no longer has the capacity to grasp certain things.

Don't tell him about your trip, and for the duration, block his number and let the staff know you're doing so. If there's a medical emergency, they can contact you. You need this break. Don't give him an opening to ruin it for you.
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MeDolly Apr 2023
Excellent post!
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Oh my goodness, go on holiday and forget about this mean old man. Just because the mean old man is your father doesn't mean you have to put up with his behavior.

We're brought up to respect our parents. We usually love them. It's a habit.

So let's turn this around. Mean Old Dad probably respected you at one time. He no longer does, that is clear from his actions. He loved you. Maybe he no longer does. If he has dementia, the disease has taken his ability to love and respect you from him. The habit on his side is broken. It's tragic, but it's not unusual.

I hope he has good medical care, and you need to find out why he acts as he does. There may be meds to help him. Ask his doctor.

The best place to grieve is on a sunny beach far away. Or maybe on a tour bus with a bunch of fun and lively people that you don't even know yet.
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Your father is obviously suffering from a form of dementia and that's why he's acting as he is. Treating him as if hes a naughty or mean child who's purposely doing this won't achieve the results you seek. He's not capable of reason or logic, or learning new tech devices, so let go of those notions and work with reality. To expect "lazy" staff to fix dad or restore him to his former self is magical thinking also. What he needs is a full cognitive workup to see what his MoCA or SLUMS score is to determine if he needs a higher level of services in memory care AL now. And a consult w his PCP for calming meds to address his agitation in general. My mom did well with Ativan.

These behaviors are hurtful to us, no doubt, so self preservation tactics need to be installed. My #1 with mom was GIVE HER NO INFO ABOUT ANYTHING. EVER. Ignorance is bliss where dementia is concerned bc they will make a huge federal case about every word you say and throw a monkey wrench into all your plans! Lie when necessary, call it a therapeutic fib if it makes you feel better, but make your travel plans on the QT and just go. Dad's cared for and they have your number AND know how to call 911 too, trust me on that 🙄

I suggest you read this 33 of booklet online about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

The full copy of her book is available here:

https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

As far as grief goes, dementia is known as The Long Goodbye for a good reason. I watched mom battle it for 6 years and turn into a shell of her former self. The most hateful of all the conditions out there, imo. She died at 95, way too long a life to live in such a state. I was relieved and grateful when God called her Home.
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MeDolly Apr 2023
I sit here often and shake my head, many caregivers feel the need to share every little aspect of their life or what is going on with the LO.

You are so right those with dementia make a federal case out of everything, they also are good at causing drama if a caretaker wants to go away.

I never give them a heads up about when & where I am going, it is none of their business in the first place.

Less is more when dealing with someone who's mind is broken.

Thank you for this post!
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My father was also my hero before the Alzheimer’s turned into an angry man. It is important to have a boundary to save your own mental health. The hardest thing for me is that I still wanted my old dad to come back. This held me back from letting go and establishing an emotional boundary with this new dad. I did finally get really stressed out and fed up with the angry outbursts. I gave him the silent treatment and did what I had to help to him out but no additional conversation. At first, he complained to others about my coldness. But gradually he stopped having tirades with me. This new relationship with my dad is not as close, but is more functional. Sometimes now, the old kind, gentle dad comes back. It has been 10 years now since I established the boundary. I am still okay and my dad is doing okay with the help of a caregiver. Wishing you best on your journey as a caregiver.
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I would step back a little and allow the facility to handle most of his needs, it's what you are paying the big bucks for after all. And don't tell him about your holiday plans.
(LOL, looks like three of us all agree)
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Yeah, NO!

You have clearly and absolutely correctly identified the fact that YOU need to do the work to relieve yourself of the burden of both your loving past AND your overwhelming present with your father whom you identify also correctly as having a horrible life and intellect sapping disease.

What is presently totally missing from your current profile is BALANCE, and every productive, positive caregiver/care recipient relationship needs that.

He is a VERY OLD MAN, and his threats and harassment are products of a failing intellect that has lost its ability for rational thought.

You are running yourself ragged to reclaim the person you knew and loved and trusted.

Would it be helpful for you to talk to someone about how to clarify your own feelings, regarding what’s happening right now?

You are assuming responsibilities that you can delegate to professionals. Find someone who knows the ins and outs of geriatric management and care, and let them walk you through where you’re doing (much!) too much for your father, and not nearly enough for yourself.

You can love the man who WAS your dad, while currently becoming aware of the fact that you are now dealing with a condition that strips its victims of filters and nuance and empathy.

For you, CURRENTLY? Take that holiday, enjoy everyMINUTE of it, and allow the staff at his residence to do their jobs. Think of every day as restoration and refreshment, and give it to yourself as medicine.

You need that, you are worth it, and YOU DESERVE IT.
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He is in a facility, he is safe, is fed and generally care for.

One thing you can do is step back a bit, let them do the job they are paid to do.

Limit the # of calls you accept from him, if he gets unruly, say "I am not listening to this" and hang up, do it every time. If he gets nasty when you visit him, leave, do it every time.

Leave on your holiday, do not give him any information, it is not his business, you are an adult, not minor child. Leave an emergency # at the home and enjoy your vacation.

You are on the edge of total burnout, only you can make the changes necessary to get a handle on the situation.

Your father is gone, never to return, that is what you are grieving, it is the circle of life, we are all born to die, and many times the caregiver dies before the patient.

Being a caregiver is a stressful job, so much is given up, understandable, however don't lose yourself in this mess, take care of you and your family first.

As for the wallet, buy a new empty one, put some non-essential stuff in it, let him have it.

I did that with my stepmother as she is always looking for her wallet and carries her purse everywhere and I mean everywhere. I notified the home, they are good with it.
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You’re describing grief. You’re already sad over what has been lost and what will never be again. Now accept that whatever “happy” was for your father is likely over, he’s in a different mental place now, one your valiant efforts can’t fix. Stop listening to the tirades, they are should crushing, no one deserves that. Enjoy your trip, guilt free, you’ve done the best you can in seeing that your dad is in a place where he will be cared for, now care for yourself. And when you return, hard as it is, try to view him more as a fellow human in need of compassion rather than the man you once knew. I wish you peace
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Daughterof1930 Apr 2023
Soul crushing she tried to type minus the joys of auto correct😜
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Its the Dementia. He probably knows something is going on but not what. His world is getting smaller and smaller. They always take their frustration and paranoia out of on the person caring for him.

Do not expect him to learn how do something new. Their short-term memory does not allow it. One of the first things my Mom forgot how to use was her TV remote and wireless phone. Trying to teach her to use the simplest cell phone went by the wayside. My Moms TV was set to a channel that had all the old TV shows. She had a hard time following them even.

They cannot be reasoned with. They have a problem processing what you say so make it a short sentence. They cannot comprehend or have any empathy. They get self-centered. IMO as Dementia progresses, they become like small children.

If ur Dad has a Dementia an AL may not be the right place for him eventually. U may have to transfer him to Memory Care. He is now in AL, some of the burden should be lifted. If he only uses his phone to call and bug u, then maybe you should "lose" it. But tell, the staff u have taken it. As that he not be able to use the facility phone. The facility will call u with any problems. His meds are now being done by the facility. He gets 3 meals a day. Laundry done. Staff to care for him. Your job now is to visit when u want. See that he is supplied with his toiletries and Depends if he uses them. Clothing when he needs it. You don't need to tell him when u go on vacation, just go. Block his phone calls. If not already, his time is not ur time. Meaning, u could be there every day and he would tell someone he never sees you. His days will just be one going into another.

You have to keep telling yourself...its the Dementia talking. Just let things row off your back. He is not doing these things on purpose. His mind is dying. Its time you take back ur life. He is being kept safe.

Sorry, you can set no boundries with him at this point. You set your own and stick by them. If u only want to visit 2 or 3x a week then thst is all you visit. If he starts a tirade, you leave. He calls and u don't want to talk, don't pick up the phone. You do what keeps u sane.
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