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?
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.
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.
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!
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.
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.
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.
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.
you're a sweet daughter, who has done a lot to help.
i hope you'll continue to remember your dad as your hero. ❤️🙂
by the way:
"He is aggressive, manipulative, verbally abusive"
some people were always like that, but your father suddenly became that way because he has dementia. it's very common. i was speaking to a doctor recently, who said he knows millions of stories like that: dementia leading to aggression, paranoia, mean, false accusations, etc.
it's really hard taking care of our elderly LOs.
and one day, we ourselves will be elderly. i hope we will be sweet, elderly people (even if we get dementia).
i bet (even if my memory fades), i'll still be telling little jokes/quotes at 95 years old...
❤️🙂
i think as soon as i started talking, i started telling jokes. 🙂
please ENJOY your holiday, OP!!
meanwhile, some random jokes for you:
❤️🙂
"What happens if you get scared half to death twice???"
---
"The only 'normal' people you know are the ones you don't know very well."
---
"The only time a woman really succeeds in changing a man is when he is a baby."
---
"I have never developed indigestion from eating my words."
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"Life is funny. If you don't laugh, you're in trouble."
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"You're just jealous because the voices are talking to me."
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"His mother should have thrown him away and kept the stork."
❤️🙂
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.
(LOL, looks like three of us all agree)
Repeat this practice for every subsequent call, with the exception of maybe one conversation a week.
Let the AL deal with his drama.