My father’s mental health has been rapidly declining and I’ve had to take a more active role as of lately. He has been repeatedly calling me about non issues and will leave many voicemails in a row if I don’t answer.
Sunday morning I awoke to 17 voicemails from him from the previous night in a span of about an hour. They started with him accusing the neighbor of poisoning the food he had brought him, saying that my husband needs to take him to get it out his system, to telling me he wasn’t going to make it and was dying, to then apologizing for calling and telling me ignore his messages.
When I called him, he was fine. He remembered he had called me because he wasn’t feeling well but did not recall all of the details. I told him that if he calls me and I do not answer, he should leave a message and I will call him back when I’m available and if he is having a medical emergency and I don’t answer, he needs to call 911. He was upset and told me he won’t call me anymore to which I told him that’s not what I was telling him.
So this morning he calls to tell me that last night, he called 911 and went to the ER at 1am because he had a cut on his back from a fall 2 weeks prior that was bothering him.
He is lying about the ER.
This seems manipulative to me.
I didn’t think people with dementia could be manipulative or spiteful. I’m trying to learn about this. I appreciate any insight. Thank you
He has dementia. He may need to go to his healthcare provider if this is a change in behavior, since other things, like a UTI, can make the dementia confusion worse. Understand that he isn't acting deliberately. He has a disease that is slowly blocking his brains connections, and one of the areas of the brain that is affected is the one that lets us remember what we've been doing all day. If he's aware there's an issue with his memory he may be very scared. Sometimes the disease makes it so the person doesn't have the capacity to see that they are struggling, (called anosognosia) and they may resist you trying to tell them what changes you see. It may upset them. If it does, just drop the subject. Along with the memory the disease affects how a person can take in and process information and emotions, so go slow.
If we assume that his behaviors are an effect of the disease and he doesn't recall phoning you, then his behaviors make a lot more sense, don't they?
Then he's not lying, he's genuinely not able to remember those 17 phone calls, and's relying on some scrambled bits of information he can still access to try to piece together what happened. Sometimes those memories are from a long time ago. From what you're describing, he's at the point where he's going to need more help with managing his meds, finances, home, etc. Now might be the time to start looking at a downsize from his home to assisted living places that have memory care. A move now may be easier than farther along in the disease. It's also the time to get the advice of a certified eldercare law attorney (CELA) if you dad doesn't have a power of attorney signed up or a long term financial plan.
This board is excellent, and the alzheimer's assosciation also has a forum and help line:1-800-272-3900
https://alzconnected.org/categories
These helped me... (sorry-you'll have to paste the links):
https://www.smashwords.com/extreader/read/210580/2/understanding-the-dementia-experience/Medium,Arial,Black,White,One-and-a-Half
Tam Cummings assessment tools/AD checklist
https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf
Teepa Snow-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg
5 losses besides memory: https://www.youtube.com/watch?v=awBm4S9NwJ0
Anosognosia: https://www.youtube.com/watch?v=5nw3YUDQJuY
Talking to a parent: https://www.youtube.com/watch?v=oiUpztj2DkQ
Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient: https://www.youtube.com/watch?v=EOCZInnLQd0
Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE
Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg
Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI
Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs
Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI
Talking to a person w/ dementia. https://www.youtube.com/watch?v=ilickabmjww
Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX
This is a very difficult situation as I have not had a close relationship with him and have not spent much time with him over the past 30 years (his choice). There has been no real baseline for me as to what is normal behavior (manipulating and lying) and what is the dementia. I am still learning and accepting that the person he was is not who he is now.
There are so many challenges that the dementia is only one of them.
He currently has no health insurance, is not drawing SS, and has no assets except a semi small settlement he received recently that will run out in about a year based on his current living arrangement.
Fortunately, I have been able to hire an eldercare attorney as well as a wonderful eldercare consultant to take the next steps for his care.
Your dad shouldn’t be living on his own. Just by reading what you wrote, you can see that he isn’t rational, doesn’t know what he thinks from one minute to the next, and could easily make a dangerous mistake that would cause him grave injury.
It is time to get him the help he needs. Care 24/7 is urgent, and the best place and easiest for you will be a memory care facility where he’ll have friends and professional help. Good luck.
"accusing the neighbor of poisoning the food"
This is paranoia.
"He is lying about the ER".
Could be a delusion, but maybe manupulation/attention.
If his symptoms are worsening, call his Doctor to advise & ask what can be done.
If this level of paranoia & possible delusions becomes his everyday, he will lose the ability to live alone safely very quickly.
I am glad to read you found good legal advice. You are building your Father's 'team' person by person.
With my mom it isn’t voicemails but it is texts and they can be similar at times to your dad’s voicemails . She has some health issue in the middle of the night and she is dying and needs to see a doctor. Then she is angry that no one cares. Then she gets suicidal or says she just wants to die. This is followed by a note saying she is okay. Then next day if you ask her about it she says: “Oh, I was trying to reach you but I can’t remember why. Everything is fine.” If questioned about the texts she will laugh and say “I did that?”
That is just when she is anxious. However, there are times when she is angry and manipulative, too. She says she will call 911 if we don’t take her to the doctor. We tell her that is a good idea if it is that urgent and then she gets mad. She says she will get a taxi. She never does but there is nothing wrong with her and she is full of it. She faked having a stroke in a restaurant and that got her a 3 day hospital stay during which they found nothing wrong with her except that she has mental problems (anxiety and depression) as well as dementia.
Anyway, yes, this behavior with your dad sounds familiar.
The book The 36 Hour Day is a great place to start along with the many videos and books that dementia expert Teepa Snow has.
Your father is not doing any of this on purpose. His brain is broken and when ones brain is not functioning as it once did all kinds of crazy things can happen, as you will learn as this disease progresses.
So by educating yourself you will be better prepared and a lot more compassionate and understanding as it does.
If he has been diagnosed with dementia you can not trust his cognition to make the determination if he needs to call 911 or how to shut off the water if the sink or tub is overflowing, or how to get out of the house in an emergency.
With dementia he will not get the "cause and effect" that a phone call to you or 911 will make.
With demenita filters that allow us to live a "normal" life in society become skewed or drop so peeing in the corner of the closet is "acceptable" undressing in inappropriate locations is "acceptable" yelling, swearing, spitting, hitting become "acceptable" to the person with dementia. I do not think that he is consiously being manipulative, this is his new "normal"
By the way his visit to the ER might have been a TV show he was watching
His thinking the neighbor is poisioning him is sometimes part of the parinoia or delusions that some people with dementia experience.
Each person is different, what your dad does may be different than what someone else goes through.
Who is responsible for your Dad?
What is his diagnosis in terms of dementia? Has there been an assessment?
What you are describing is either severe dementia, or it is severe mental illness. Please tell us more about the status of your dad's living conditions.
With both mental illness and with dementia a person is not "spiteful". They have disinhibition and are not in control of their actions. You need to find out what is going on with your father now. You listed this under "dementia" and I am concerned that he may still be living alone, which would be a danger to him at this time.
He lives alone, no health insurance/benefits, no assets, and no income. He is living off of a small settlement that will run out and definitely would only last him a few months in a memory care facility. In our area, they are running about 10-12k per month. Which right now, he would refuse to pay for.
He has some very kind neighbors that have been helping him out.
I have stepped in recently when I realized he needs help.
I’m working with an eldercare consultant to get him benefits and assess him to see how we can help with possible AL or home care and an eldercare attorney to figure out the legal aspects such as guardianship.
He is still caring for himself in the way of grooming, making food, doing his laundry, etc. He has moments of clarity but his bouts of paranoia and delusions are rapidly increasing particularly late at night/ early morning.
He has no POA in place. I can’t just move him somewhere especially when he doesn’t want to go.
I have a medical evaluation set up for him this Thursday. He has not been officially diagnosed.
This would be a lot easier with a stable person who had benefits in place and had planned for their future. But I am dealing with a stubborn man who has ran from things his entire life :(
If all he uses his phone for is calling you, I would "lose" it. If he is placed, he needs to adjust to his surroundings and the staff doing for him. Calling you every time he wants to complain or needs something will not help him adjust.
They not only can be spiteful, they can be hateful, cruel, mean, unbending, depressed, anxious, mad, selfish and well--you get the drift.
To some degree, the dementia is just a broken brain. The person is not really able to make decisions and do what's 'right''
Dementia can also be a very sneaky disease in that it takes a person who wasn't so lovely to begin with and as the dementia progresses, the family just kind of shakes their collective heads and go "well, that's mom being mom'. And dementia is not even counted as a factor.
My MIL is the latter category. She was NEVER 'nice' but always had a sharp barb to stick you with when she felt you needed it.
Her kids have been caring for her for quite a long time and the other night I made some off hand comment about her (VERY OBVIOUS) dementia and my DH came right back with the statement that SHE DOES NOT HAVE DEMENTIA.
I looked at him and said "you HAVE to be kidding me? you can't see how she acts, talks, etc. and think it's OK? just the way she is?" He argued that since a Dr had not diagnosed her as such, in their opinions, she was 'fine'.
His malfunctioning brain is "filling in" the information and memories he has lost by creating preposterous stories. That doesn't mean he's deliberately lying, but that the void created by the missing information and memories cannot be tolerated by the brain and it will literally make stuff up to "explain" these gaps, even if it makes absolutely no sense.
Please look up CONFABULATION in dementia to see if it matches what you seem to be experiencing.
Part of the reason that caregivers are so exhausted is because of having to deal with these behaviors. They "lie", because they are in a different reality. They are agitated because they are scared. They hallucinate and have delusions.
My mom was so agitated that she would scream, hit, and bite.
If he's living alone, he CAN'T anymore. It sounds like you are expecting him to make rational decisions. He CAN'T because he has Dementia.
You need to join the Alzheimer's Dementia Caregiver's FB Support Group so that you can learn about this disease:
https://www.facebook.com/groups/dementiacaregiversupportgroup/?ref=share&mibextid=NSMWBT
Google / read Teepa Snow's website. She is the leading expert in dementia.
It is to your benefit to prepare yourself for any / every response and learn to put some emotional distance between you and your dad. This is hard to do although with education in how the brain changes / cells die, it will help you to develop compassion - come from a place of compassion instead of - or along side - of hurt and grief.
Gena / Touch Matters
Nice try ma.
So yeah, people with dementia can be VERY spiteful.
So to answer your question, yes, they can be spiteful, hateful, lie, vindictive, childish, petty, mean, violent and downright scary. They can also be loving and sweet. Their brain is dying and their behaviors can change on a dime.
Your father may need more care than you can provide. Can you hire home help so he’s not alone or would you consider a facility? Something to start thinking about.
non issues for you, there is an underlying issue for him - is he living alone? Has his Dr said he is sundowning? Perhaps Dr can prescribe something for sundowning and something that will help him sleep. It may be time to look at memory care if neither of these help. Is there a durable power of attorney, it will need to be activated for decision making.
you can seek advise from the social worker at the local Senior Center. Also, legal aid may be available at the Senior Center. Start with his Dr.
Yes, and many other negative, unpleasant behaviors often manifest during the disease process including becoming not only verbally aggressive/ abusive but also physically.
Please remember that a dementia patient does not cognitively process conversations normally nor remember short term conversations.
They also, depending on stage of dementia, become fearful and, are really not capable of making safe and sound decisions for self .
Be sure that you have POA paperwork and other decisions making authority assigned so that you can make appropriate decisions for his safety. Speak with his PCP about these behaviors you are observing and, begin to look into options for his ultimate, if not already, 24/7 care.
Practice good self care.....you will need it !
Disclaimer: Not my authoring.