Hello. Hoping to get some frank advice. My dad was diagnosed with dementia about five years ago. It started slow where he was somewhat forgetful, but it has gotten progressively worse.
My mom was his primary caregiver up until she was diagnosed with cancer eight months ago. Sadly, about a month ago, my mom died. He is currently being cared for by caregivers.
I knew the memory loss was bad, but didn’t realize how much my mom endured during her final years. My dad’s repetitive questions, angry temper, and false accusations got worse and worse over time.
My question here is asking for advice on how to personally deal with his behavior. For example, my father lost or hid his wallet. It was always in his possession. He doesn’t believe he lost it and is accusing everyone, including me, of stealing it. He makes vicious comments to myself and the caregivers about how the person who stole it will be punished by God.
He calls me about ten to fifteen times a day about a subject that is currently on his mind.
I always answer the phone for fear that it might be an emergency. My wife recognizes my frustration. I am hoping for some helpful suggestions so that my frustration doesn’t get misdirected towards my family.
Thank you.
You might want to consider a life-alert style system for him to wear so that you won't feel compelled to answer his every call (assuming he does not have full-time care?). His constant calling is very disruptive and you must put a boundary around it, for your sake and your wife's. You may want to instruct his caregivers to try to redirect his actions when he is reaching to call you. Not sure if the caregivers provide any social activities for him, but maybe there is not enough going on for his mind to be otherwise occupied? Eventually his care will exceed the cost of a facility and there will be no real benefit to keeping him in his home. A facility will provide more social exposure, medical attention and peace of mind for you. I'm not judging anyone who desires to keep their LO at home, but they just need to understand that this pathway usually becomes very expensive and mentally/emotionally strenuous. Keep up the good and loving help for your dad, just not at the expense of your own marriage and life.
EVERYTHING HE DOES is altered by the fact that his brain is being progressively more and more damaged by the process of his illness.
If his caregivers are worth the money you are paying them, THEY WILL KNOW that what he says does not accurately reflect facts.
You are clearly a loving and caring son.
Part of your ability to manage him now depends upon your ability to stop thinking that what he says relates to reality. It JUST DOESN’T.
If you have not yet considered the fact that his safety may depend on full time care, or if not now, will soon, this is a good time to consider it.
MOST DIFFICULT for you, you need to realize that whether he has said he will NEVER enter residential care, if his safety and well being ultimately require 24/7 care, it will be up to YOU to make that decision for him. I have had to make that decision twice and after considering both of those loved ones and the care they received, I have realized that the decision was the right one for each of them.
Please ask specific questions here, as they occur to you. You will be welcome, and odds are good that someone here will have encountered issues similar to yours.
The repetitive q's, anger, false accusations are all part of the mid to later stages of the disease causing his dementia. Having been a caregiver for my wife for several years, I can empathize with your plight. You may want to seek counseling for yourself in how to deal with this, I did. I assume he is being cared for at his home. It might be time to start looking for a memory care facility for him if he can afford it, it may be less expensive than home care depending on what he is paying for that. When it became more than frustrating, when it became intolerable for me, I had to find my wife a new "home". You may want to start a conversation with him to express your concerns and how a care facility could help. Possibly visit some facilities. His symptoms will only worsen.
Are there dementia support groups in your area? You can share your frustrations and emotions and get helpful advice and suggestions from the others in the group who are also dementia caregivers. Call the Alzheimer's Assn (800-272-3900) to find a group in your area.
It is very important that you have healthcare power of attorney (or someone in your family). If not, please arrange for it now. It will allow you to make his healthcare decisions when he becomes incapacitated. You also need a financial POA. See an elder care atty.
Two books I recommend are "The 36 Hour Day" and "Learning to Speak Alzheimer's". Educating yourself can help you understand what's going on.
How long has it been since he has seen his neurologist? If a while, you may want to make an appt when the office opens up again. The doctor may be able to give him medication to curb some of his anger and paranoia.
There are different types of Dementia and finding out which type he has helps with medication. Lewy body and Parkinsons show similar traits and are confused with each other. I think, if a Lewy body person is given a Parkinsons med, it can be deadly. Here is an article about the differences
https://m.activebeat.com/your-health/women/robin-williams-death-9-things-to-know-about-lewy-body-dementia/?utm_medium=cpc&utm_source=google&utm_campaign=AB_GGL_US_MOBI-SearchMarketing_TR&utm_content=g_t_303659477023&cus_widget=&utm_term=lewy%20body%20dementia&cus_teaser=kwd-35132660&utm_acid=3040947159&utm_caid=1599827680&utm_agid=62022144433&utm_os=&utm_pagetype=multi&gclid=CjwKCAiA7t3yBRADEiwA4GFlIwXNqttVn7Uds_rHQseE0Lf2rFXNN0wDvS4RrIV-lP80ott8wAXsuRoClvoQAvD_BwE
As Dads desease progresses he will become incontinent. Need more and more physical care. If he is in the mid stage of his Dementia, maybe a good time to find a facility for him now. So it becomes home to him.
You are the quintessential adult child of one parent who has been shielded by a loving parent caregiver.
Your father was able to escape closer scrutiny from you because your mother made it all look so much easier than it was.
We, as caregivers, have a significant chance of preceding our loved ones in death. I am sorry for the loss of your mom and I know you realize more everyday how much she did for your father and yourself.
At the same time it is possible that your mothers death has advanced your fathers dementia. Does he mention her? Seem to remember her? Want to go to the cemetery? My aunt, 93, doesn’t remember her husband.
Your father’s story of losing his wallet is very common but when it happens the first time it’s upsetting to you and you can’t help but respond to him as you would in years gone by but you will adjust.
Dad, sadly, will not.
It may not be the wallett next time or he may remain fixated on it.
The job for you is to get everything of importance out of the wallet and replace it with contents that won’t matter if he loses it and to learn how to respond.
Always agree and then divert his attention.
“what?! Your wallet is missing? Let me help you find it.
Hey dad look at that Redbird! It’s the first I’ve seen this spring. let’s go fill the feeder”.
Look up Teepa Snow videos on YouTube and watch how she interacts with folks with dementia.
Talking to dad about alternate housing may be upsetting to him and he probably won’t remember that he agreed (if he does). You might try it once just to see how it goes but don’t continue if it upsets him.
Think about cameras. You can always check to see how things are going before answering calls. You will need to manage the calls. He needs to rely on the caregivers. He will if you make yourself unavailable. Encourage the caregivers to interact with him more.
And FS, what if it is a true emergency? One day it will be. Do you have things in order to take care if him? Visit a certified elder attorney for your dad’s state. Get some professional advice.