There isn't much to "do" for dementia once it's diagnosed anyway but to treat symptoms like agitation, depression etc. My mother was diagnosed with progressive dementia with a simple 10 minute MoCA exam in the hospital. I found the neurologist to be a waste of time and putting her thru long, involved batteries of tests that take hours and involve return visits don't accomplish much of anything anyway! It's not like there is a cure or even a way to stop the disease from progressing.
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your dad and what to expect. All the doctors are pretty clueless so you're better off staying on Agingcare or the Alz.org forum to learn from those of us in the trenches and actually doing rather than those speculating.
Teepa Snow is a dementia expert and has some very good videos on YouTube, and Joshua Pettit has a Facebook page with videos chronicling his mother Betty's journey with Alzheimer's. She's in the end stages now and on hospice, but you can get a good feel for what dementia looks like from Betty. Josh is doing the world a bigger favor showing the face of dementia and Alzheimer's than anyone else I can think of. Betty agreed to be filmed when she was diagnosed.
In your profile you say that you're getting nasty with your father because you are his only caregiver and can't get away, so my concern is more for you than finding out what kind of dementia your father has. You can start by calling your local Senior Services and local Area Agency on Aging to see what type of help or programs your father may qualify for. If he's a veteran they offer help there too. You must take care of yourself and be able to get away for a while if you plan on continuing on this journey with your father. But I can tell you that it's only going to get worse going forward, and if you're already losing it with him, I can't help but be concerned for you both, as you matter too in this equation. Know too that the life of a dementia patient can range anywhere from 5-20 years, and there is no cure and no magic pill to stop it. Any dementia drug on the market now is only to "supposedly" slow things down, but the jury is still out as to whether they actually do anything at all. So any medications that are given are typically for dementia behaviors. A neurologist can often diagnose what type of dementia a person has, but not always. Doctors are still in the learning process about this horrific disease, so it's up to you to learn as much as possible about it so you have somewhat of an idea of what lies a head for you and your father. Please take care of yourself as you DO NOT want to be in the 40% of caregivers who die before the one their caring for with dementia from stress related issues.
You need to make an appointment with a Neurologist and or a neuropsychologist. If your dad has a type of insurance that requires a referral ask his doctor for a referral to either of theses specialists. If there is no referral needed call ones in your area and get the earliest appointment that is available and ask to be put on a waiting list for cancellations.
Can you clarify what you mean by ""His PCP doesn't seem to care."?
It could be that unless you are his MPoA or HIPAA Medical Reprentative or legal guardian, his doctors legally cannot legally talk to you or take action from your prompting because you lack authority to act on his behalf.
I strongly suggest that if you are not your Father's PoA you need to encourage him to do this before he gets a diagnosis of cognitive impairment. If you do it in the wrong order, your PoA could come into question based upon him having a diagnosis of incapacity when he assigned you. If there are no other close relatives or siblings who would contest this, then you're somewhat safer.
If you take him in for an appointment with an elder law attorney, that lawyer will privately interview him to make sure he meets the criteria for legal capacity and also to make sure he isn't being coerced. The bar for capacity is pretty low so even if he has some mild memory impairment or confusion, he may still be able to assign you (and also create other really important documents, like Advanced Healthcare Directive, Last Will, etc). An alternative would be to do this through Legalzoom.com or Rocketlawyer.com (I did it with 2 relatives with Legalzoom and everything has been fine).
A dementia diagnosis can be helpful in getting Hospice care at some point. Medicare will allow a dementia patient to receive Hospice care for a long period of time as long as they are declining, even very slowly.
My Mother's PCP basically dumped her three years ago and told me to find her another doctor. I demanded that he refer to a home health organization which he did and I was able to move on from there with care for my Mother, who lives with me and is housebound at 97.
A neurologist can help with assessment and diagnosis of your father's brain function. You should also take this time to learn as much as you can about his dementia and what to expect. His behavior is irritating you now. I think it is because you are comparing him to his past personality and behavior and expecting the same. Once you accept his mental decline, and learn more about what behaviors may be typical for someone with dementia, you can become more comfortable with his current actions. You can't reason with a brain that doesn't function properly.
I encourage you to explore programs in your community so that you can get a break! Perhaps at his current level of function, an adult day care. Some may even offer transportation, that is, send a van to pick him up and take him for several hours where he can interact with others and have activities. Hopefully it's good for him, and can provide you a little break. Down the road, if being his primary caregiver is just too demanding for you, consider placing him in a nice memory care facility. The staff is experienced in dealing with his needs, and the facility is designed for the safety of its patients.
Also, contact your local Medicaid office. In some areas, you may get a social worker to come and meet with him and do their own assessment and let you know what medicaid paid programs his is eligible for. That could be providing payment for you as his caregiver, or having a caregiver come to the home, to give you a break. I know the frustration. I've been caring for my husband for 9 years. Here are some of the things that have helped me when I get frustrated: 1) Having someone come in to care for him so you can get away. Even for a couple hours. I found that when I returned home, I was always happy to see him, feeling like I missed him while I was gone. 2) Stepping outside for a bit. Or go for a short walk, or even to another room and watch a movie. Just get away from him for a while when you feel you are getting frustrated, instead of taking it out on him. 3) I go online and google whatever symptoms he's exhibiting and read advice from experts. This helps me to gain a new perspective. Instead of being angry with him, which is useless, understanding why he is acting this way, how he sees things, and using expert's tips for managing it. Usually that involves REDIRECTION. Learn how to use this, it will be your friend. And, as Geaton advised, take steps now to become his POA. This will be beneficial as he declines and you will need the legal ability to take control and make decisions in his best interest, whether handling money, paying bills, or making decisions for his medical care.
Get a new PCP, preferably a Geriatric one. Many doctors see the elderly as expendable. No effort is given. Ask new PCP for a referral for a neurologist. A simple CT Scan of the brain gives an accurate basic result. Easy 10 minute x-ray.
If a doctor acts lazy or doesn't seem concerned, GET A NEW ONE. Good luck!
Pick up a copy of the book Understanding the Dementia Experience by Jennifer Ghent-Fuller on Amazon so you can learn about dementia and how to deal with your dad and what to expect. All the doctors are pretty clueless so you're better off staying on Agingcare or the Alz.org forum to learn from those of us in the trenches and actually doing rather than those speculating.
Teepa Snow is a dementia expert and has some very good videos on YouTube, and Joshua Pettit has a Facebook page with videos chronicling his mother Betty's journey with Alzheimer's. She's in the end stages now and on hospice, but you can get a good feel for what dementia looks like from Betty. Josh is doing the world a bigger favor showing the face of dementia and Alzheimer's than anyone else I can think of. Betty agreed to be filmed when she was diagnosed.
Best of luck to you with a difficult situation.
You can start by calling your local Senior Services and local Area Agency on Aging to see what type of help or programs your father may qualify for. If he's a veteran they offer help there too.
You must take care of yourself and be able to get away for a while if you plan on continuing on this journey with your father. But I can tell you that it's only going to get worse going forward, and if you're already losing it with him, I can't help but be concerned for you both, as you matter too in this equation.
Know too that the life of a dementia patient can range anywhere from 5-20 years, and there is no cure and no magic pill to stop it.
Any dementia drug on the market now is only to "supposedly" slow things down, but the jury is still out as to whether they actually do anything at all.
So any medications that are given are typically for dementia behaviors.
A neurologist can often diagnose what type of dementia a person has, but not always. Doctors are still in the learning process about this horrific disease, so it's up to you to learn as much as possible about it so you have somewhat of an idea of what lies a head for you and your father.
Please take care of yourself as you DO NOT want to be in the 40% of caregivers who die before the one their caring for with dementia from stress related issues.
If your dad has a type of insurance that requires a referral ask his doctor for a referral to either of theses specialists.
If there is no referral needed call ones in your area and get the earliest appointment that is available and ask to be put on a waiting list for cancellations.
Good luck.
It could be that unless you are his MPoA or HIPAA Medical Reprentative or legal guardian, his doctors legally cannot legally talk to you or take action from your prompting because you lack authority to act on his behalf.
I strongly suggest that if you are not your Father's PoA you need to encourage him to do this before he gets a diagnosis of cognitive impairment. If you do it in the wrong order, your PoA could come into question based upon him having a diagnosis of incapacity when he assigned you. If there are no other close relatives or siblings who would contest this, then you're somewhat safer.
If you take him in for an appointment with an elder law attorney, that lawyer will privately interview him to make sure he meets the criteria for legal capacity and also to make sure he isn't being coerced. The bar for capacity is pretty low so even if he has some mild memory impairment or confusion, he may still be able to assign you (and also create other really important documents, like Advanced Healthcare Directive, Last Will, etc). An alternative would be to do this through Legalzoom.com or Rocketlawyer.com (I did it with 2 relatives with Legalzoom and everything has been fine).
My Mother's PCP basically dumped her three years ago and told me to find her another doctor. I demanded that he refer to a home health organization which he did and I was able to move on from there with care for my Mother, who lives with me and is housebound at 97.
You should also take this time to learn as much as you can about his dementia and what to expect. His behavior is irritating you now. I think it is because you are comparing him to his past personality and behavior and expecting the same.
Once you accept his mental decline, and learn more about what behaviors may be typical for someone with dementia, you can become more comfortable with his current actions. You can't reason with a brain that doesn't function properly.
I encourage you to explore programs in your community so that you can get a break! Perhaps at his current level of function, an adult day care. Some may even offer transportation, that is, send a van to pick him up and take him for several hours where he can interact with others and have activities. Hopefully it's good for him, and can provide you a little break.
Down the road, if being his primary caregiver is just too demanding for you, consider placing him in a nice memory care facility. The staff is experienced in dealing with his needs, and the facility is designed for the safety of its patients.
Also, contact your local Medicaid office. In some areas, you may get a social worker to come and meet with him and do their own assessment and let you know what medicaid paid programs his is eligible for.
That could be providing payment for you as his caregiver, or having a caregiver come to the home, to give you a break.
I know the frustration. I've been caring for my husband for 9 years.
Here are some of the things that have helped me when I get frustrated:
1) Having someone come in to care for him so you can get away. Even for a couple hours. I found that when I returned home, I was always happy to see him, feeling like I missed him while I was gone.
2) Stepping outside for a bit. Or go for a short walk, or even to another room and watch a movie. Just get away from him for a while when you feel you are getting frustrated, instead of taking it out on him.
3) I go online and google whatever symptoms he's exhibiting and read advice from experts. This helps me to gain a new perspective. Instead of being angry with him, which is useless, understanding why he is acting this way, how he sees things, and using expert's tips for managing it. Usually that involves REDIRECTION. Learn how to use this, it will be your friend.
And, as Geaton advised, take steps now to become his POA. This will be beneficial as he declines and you will need the legal ability to take control and make decisions in his best interest, whether handling money, paying bills, or making decisions for his medical care.
A simple CT Scan of the brain gives an accurate basic result. Easy 10 minute x-ray.
If a doctor acts lazy or doesn't seem concerned, GET A NEW ONE. Good luck!
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