New to caring for dementia

Posted by mfilson @mfilson, Dec 9, 2022

I'm at a loss as to how to deal with caring for my father. He is in complete denial that he has memory problems. He also seems to have something that I'm not sure I've heard about with dementia patients. He has displacement of location and has created this alternate world where he has explained away things. For example, he thinks he has houses in another state where he lived most of his life and that he goes there often to take care of the places for a company. He thinks he has seen people that he has not in years. He is still driving and I don't know how to stop him. His wife has taken his car just to keep him from going out but that is temporary and he becomes upset by it. He seems to drive fine, but does get disoriented. We have his phone tracked and his car as well but that is not a solution. I've not gotten power of attorney but I'm considering this before he gets worse. He has good moments where I think oh he is doing great and then he brings up something that is completely false and impossible, I have a hard time believing anything that he says. I'm trying to learn to just go with it and not try to correct him but it's difficult.
I'm also dealing with an upcoming transplant for me so my cup is running over! I feel like the medical community just put their hands up and say there is not much that can be done about dementia. His neurologist just prescribes some Namenda and is done until the next refill. Has anyone actually had some results from doctors in slowing progression or is the treatment to try to deal with the side effects of dementia. Thanks for reading!

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Good morning, @mfilson I am sorry to read of your challenges with your dad's dementia. My name is Scott and I was my wife's caregiver during her journey, my mother-in-law also, and worked for the national Alzheimer's Association. It is not an easy road you are on, especially with your upcoming transplant.

I know everyone's journey with this disease is different, but I wanted to share a few things that came to my mind from reading your post. My first thought was that I worry your dad is a hazard on the road and should no longer be driving. Both my wife and MIL thought they were still good drivers when they really were not. Confusion on the road can be a terrible situation for a driver. I had my wife take an electronic driver's test with her doctor and he was able to tell her the results and that she should no longer drive.

Regarding the POA, MPOA, directives, planning, etc., I'd sincerely recommend you do it while your dad can still be of some help and understand it. Plus mentally things can change really fast at times. Once they are not competent to sign legal documents, things get far more difficult to complete, undertake, etc. Also, if you haven't I'd recommend he add you to his HIPPA approvals so the doctors can all talk freely and completely with you — and you can do the same with them.

Both my wife and MIL had all sorts of delusions about their lives. My MIL became certain she was married to the UPS delivery fellow. My wife had a wide variety of unreal things as vision, olfactory, and auditory illusions she was certain were real. I often invoked that old phrase from Ron Reagan "trust, but verify" when listening to my wife and MIL.

It is beyond sad that there is no cure for dementia yet, but I do know there are medical professionals the world over trying to figure this one out and I've read there are newer medications that can help lengthen plateaus with some patients. One of my biggest frustrations was when my wife's neurologist said to me "we really don't know all that much about all the things the brain can do and how it works, and when it's broken we know far less." Even something as innocuous as her being left-handed complicated their understanding of her symptoms, etc.

If I may ask, how long has your dad been exhibiting his symptoms, and does he still live at home?

Strength, Courage, & Peace

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I am new to this domain and only have to contend with an MCI wife. So this from a ‘rookie’ in these matters.
What struck me, is the driving.
“ he thinks he has houses in another state … and he goes there often …He thinks he has seen people…”
If an unfit driver (just to be morbid for a moment) thinks he has seen something or maybe missed something and runs over a child because he missed seeing the child, while distracted seeing something that was NOT there. Then what do y’all say to the child’s parents??
I would check with the Police on that, and maybe how to limit you father’s driving. Maybe police know something we don’t.
Randy

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My husband has had mixed dementia for over 9 years. What you are describing is not uncommon. Driving is one of the most difficult issues we face. My husband drove a semi truck and trailer for most of his working years and for him to be told that he shouldn’t be driving was terrible for him. He denied it over and over whether I told him the doctors have said it or pointed out other reasons like cataracts or his painful knees. He’d just get angry and say that the doctors don’t know him or whether or not he can drive. We solved some of it by having our daughter drive. He seemed to be ok with that. I bought a new car in the spring and haven’t let him drive it. I hurry to get in the driver’s seat and he’ll get in the passenger’s seat reluctantly because he still likes to get out. He’s not happy about it but it’s getting better. I had a kidney transplant in 2018 and am doing well. I wish you the best.

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@randywhite

I am new to this domain and only have to contend with an MCI wife. So this from a ‘rookie’ in these matters.
What struck me, is the driving.
“ he thinks he has houses in another state … and he goes there often …He thinks he has seen people…”
If an unfit driver (just to be morbid for a moment) thinks he has seen something or maybe missed something and runs over a child because he missed seeing the child, while distracted seeing something that was NOT there. Then what do y’all say to the child’s parents??
I would check with the Police on that, and maybe how to limit you father’s driving. Maybe police know something we don’t.
Randy

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You are completely correct @randywhite about the concerns and we will have to see how we can get his license revoked.

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@cmael

My husband has had mixed dementia for over 9 years. What you are describing is not uncommon. Driving is one of the most difficult issues we face. My husband drove a semi truck and trailer for most of his working years and for him to be told that he shouldn’t be driving was terrible for him. He denied it over and over whether I told him the doctors have said it or pointed out other reasons like cataracts or his painful knees. He’d just get angry and say that the doctors don’t know him or whether or not he can drive. We solved some of it by having our daughter drive. He seemed to be ok with that. I bought a new car in the spring and haven’t let him drive it. I hurry to get in the driver’s seat and he’ll get in the passenger’s seat reluctantly because he still likes to get out. He’s not happy about it but it’s getting better. I had a kidney transplant in 2018 and am doing well. I wish you the best.

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Yes, the frustration and anger @cmael is hard to deal with and I'm sure it is only going to get worse as time goes. Thanks for your words.

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@IndianaScott

Good morning, @mfilson I am sorry to read of your challenges with your dad's dementia. My name is Scott and I was my wife's caregiver during her journey, my mother-in-law also, and worked for the national Alzheimer's Association. It is not an easy road you are on, especially with your upcoming transplant.

I know everyone's journey with this disease is different, but I wanted to share a few things that came to my mind from reading your post. My first thought was that I worry your dad is a hazard on the road and should no longer be driving. Both my wife and MIL thought they were still good drivers when they really were not. Confusion on the road can be a terrible situation for a driver. I had my wife take an electronic driver's test with her doctor and he was able to tell her the results and that she should no longer drive.

Regarding the POA, MPOA, directives, planning, etc., I'd sincerely recommend you do it while your dad can still be of some help and understand it. Plus mentally things can change really fast at times. Once they are not competent to sign legal documents, things get far more difficult to complete, undertake, etc. Also, if you haven't I'd recommend he add you to his HIPPA approvals so the doctors can all talk freely and completely with you — and you can do the same with them.

Both my wife and MIL had all sorts of delusions about their lives. My MIL became certain she was married to the UPS delivery fellow. My wife had a wide variety of unreal things as vision, olfactory, and auditory illusions she was certain were real. I often invoked that old phrase from Ron Reagan "trust, but verify" when listening to my wife and MIL.

It is beyond sad that there is no cure for dementia yet, but I do know there are medical professionals the world over trying to figure this one out and I've read there are newer medications that can help lengthen plateaus with some patients. One of my biggest frustrations was when my wife's neurologist said to me "we really don't know all that much about all the things the brain can do and how it works, and when it's broken we know far less." Even something as innocuous as her being left-handed complicated their understanding of her symptoms, etc.

If I may ask, how long has your dad been exhibiting his symptoms, and does he still live at home?

Strength, Courage, & Peace

Jump to this post

Thank you for your words @IndianaScott and yes driving and getting a POA are crucial to deal with. I'm already on his HIPPA releases. Hearing that the delusions are part of this decease is good to know, I've never heard of it developing like that, but I don't have much experience with people who are suffering with dementia. I will keep your advise in mind, "trust, but verify" will be my new repeat motto.
My father started experiencing problems that were noticeable about a year ago. He had two episodes were he did not have a stroke according to doctors, but could not talk or make sense for a few minutes. After that it seemed that he started to forget things more and we did an MRI that showed small brain bleeds consistent with Amyloid angiopathy. It has been getting worse over the last 3 months and specifically after he had a mild sedative for an outpatient surgery. I read that sedatives in surgery can cause increased disorientation which makes sense, but it has really been extreme.

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I watched first my father, and now my brother, decline with dementia, so I know all too well the heartbreak and frustration you are experiencing.

If there is any way you can communicate with your father's doctor, you might consider asking for him to be checked for a urinary tract infection. Sometimes UTI's can contribute to delusions.

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So sorry you are going through this. It is such a difficult time. I have a husband with Lewy Body dementia and you might want to have your father tested for that. It is the second most common form of dementia after AlZheimer’s. The meds are different and the earlier you start the more it can help with the symptoms. May you find peace along the way.

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