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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).
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.
A diagnosis can help you know a 'label' but it seems you need practical help, diagnosis or not.
What about your local council. Do they have an aging service to call & obtain a needs assessment? Find out what aging home help services are available, how to apply, how to get actual people to come & help you. Help your Father with bathing if required, or help you with chores, or provide supervision so you get a break.
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.
There is a lot of good information provided here through the answers. To place it is order: 1: If you do not have a medical PoA and/or a financial PoA get it before anything else. 1A: you will be able to either pull one by google search, or go to his financial institution, they have the forms or go to an elder law attorney (could be costly) and not necessary unless you are expecting some push back from other family members. You will need a witness and have it notarized with your father present. 1B: get a medical PoA again you can google search it or his Dr. will be able to provide you one. Again you will need a witness and have it notarized.
Is there a reason you want a diagnosis? If it is just to confirm the dementia you truly do not need a neuro; it is just extra costs and trips to Drs and a lot more stress on your father. Geriatricians are primary care physicians who specialize in older adult. They are able to diagnose dementia as well as other existing medical issues and will not require a referral.
2: Call your local Senior Services and local Senior Agency on Aging, they will guide you on how/where to get some assistance for both you and your father.
3: google search Teepa Snow and watch her videos, it will help you understand what you are dealing with and how to navigate it.
4: Sounds like you are starting to get burned out, you need to take care of yourself. I know it is not easy as I have been there done that.
If you or your father belongs to AARP they are a great resource and as someone else mentioned https://www.alz.org/
i agree that there is a lot of good information that has been put forward! With my mother, who is still at the mild cognitive decline stage, the best thing that happened to help was when we found an excellent gerontologist who listens and can refer us to specialists if needed. She doesn’t see seniors as disposable but realizes they are still human and which treatments and approaches help with the quality of life. (A previous doctor that my mother went to basically told her that she was old and essentially that dying would take care of it all.) My mothers current doctor doesn’t pretend to know all the answers but she knows how to find specialists who do. My mother has given her permission to talk with her two caregivers so we can all work as a team and it is working well so far. You don’t need someone who knows all the answers but does know what questions to ask, how to listen, and who to refer to for the answers with complicated issues. The cardiologist, dermatologist, ophthalmologist, dentist, and others recommend treatments but she knows my mother the best and what my mother can handle. Perfect medical care isn’t possible with elderly who can be very stubborn, forgetful, and have physical limitations that make some treatments difficult and hard on everyone! She figures out what is realistic and has had a very positive effect on my mothers health! She is also a great source of support for the caregivers. I hope you find someone like her, but I know it isn’t always easy. Take care!
Acquiring a medical diagnosis is very important for the following reasons because dementia is a disability. And, I would suggest seeing a neurologist specializing in geriatric care:
1. If your father is a veteran he may be entitled to additional funds from the VA called Aid and Dependence to help pay for his care. 2. The Department of Human Services may be able to offer community service aide assistance to help with his care. 3. The physician may be able to prescribe a medication to help slow the progression of the disease. 4. If Medicaid eligible, Medicaid might pay family members to take care of him. 5. This will also allow you to apply to be his financial Fiduciary and manage his SS and VA benefits.
If he agrees, ask him to allow you to be added to his bank accounts to help manage his funds and pay his bills. Before, he is officially diagnosed have him sign a Durable POA, in the presence of a Notary which allows you to take care of his financial business.
MD AMEN. HE'S THE ABSOLUTE BEST. (I took my client there 20+ years ago; he is now quite well known, presenting on KQED / PBS stations all over the country. At least call his office for a referral. I presume he is quite expensive and backed up with patient requests.
https://www.amenclinics.com/brain-health/memory-loss-2/?keyword=dementia%20specialist&utm_source=google&utm_campaign=G_HighPriority_MemoryLoss_BOF_SRCH_NB_CONV_Evergreen_Standard&utm_medium=cpc&utm_content=20146131591-164129895034-696698609738&utm_term=dementia%20specialist&gad_source=1&gclid=Cj0KCQjw0ruyBhDuARIsANSZ3wo8B5kzgfvUCusxiD87A5UChcidhcwHKVOdguXATkPBNqIigJMUfm0aAmrXEALw_wcB ____________________ For insurance reasons (?) ... from my experience, medical providers usually do not say or diagnose "dementia." At least initially, they diagnose it as a TIA: transient ischemic attack.
See this website: https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679
A transient ischemic attack (TIA) is a short period of symptoms similar to those of a stroke. It's caused by a brief blockage of blood flow to the brain. A TIA usually lasts only a few minutes and doesn't cause long-term damage. However, a TIA may be a warning. About 1 in 3 people who has a TIA will eventually have a stroke, with about half occurring within a year after the TIA. Often called a ministroke, a TIA can serve as both a warning of a future stroke and a chance to prevent it.
I apologize if this is duplication, because I have not thoroughly read all the previous posts.
My husband has Parkinson's related dementia and below are resources I have found extremely helpful not only to him but also me as his caregiver. You probably are not in our area so I am not suggesting traveling to these providers, but if you read their bio you may get a bit of insight about their qualifications and the kind of provider to try and find.
I have read in the comments here you don't necessarily need to know the type, but I respectively disagree. Dr. Sollman explained to me there are several types of dementia and while there may not be a cure, it can be very helpful knowing more about how the dementia you are dealing with exhibits itself. Understanding that much of my husbands behaviors are typical patterns for PD related dementia has gone a long way to helping me be more patient as a caregiver. She even gave me names for certain types of behaviors that I then read more about to get even more information. For instance my husband often exhibits Motor Perseveration, Reduplicative Paramnesia, and Confabulation behaviors. Do not take this to mean all PD related dementia patients will have the same issues because as I have said so many times... all PD patients do not have the same journey. In fact other types of dementia may also exemplify these behaviors but it may show itself in a different manner. A neuropsychologist can customize the testing to help identify the current deficiencies a person is struggling with.
A friend was told her husband had PD related dementia and after proper testing, found out it was vascular dementia which progressed much faster the same as Lewey Body Dementia which is often misdiagnosed.
Most PCPs have limited experience or even training in dementia issues, so it may not be they don't care it may simply be they don't understand them. I highly recommend a geriatrician for everyone 65 and older...it has made a huge difference in our journey physically and dementia related.
First! Get a new doctor. See a neurologist for memory loss. I did, without a prior referral from my PCP. I just knew my memory was going, still is, somewhat stable, I knew a neurologist was the right type doctor from previous experience with spouse. neuro = nerve or mind.
Yes! Because my mom was several states away and so proud to live on her own after my dad died her doctor undertreated her for several conditions because 'she's not very sophisticated and the best thing for her would be to drop dead' (at age 78, mind you!) Once her doc realized I had authority in her care he had to be more mindful! Insist on a geriatric specialist.
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!
KDinMD60 here. A big thank you to everyone that posted to my query. I really appreciate the time and advice you all have given. As far as POA my father already gave that to my younger sister who lives out of state but is still able to visit. I found out when I called my father’s bank about putting me on his account that I can’t do that. Only the POA (my younger sister) can do something like that. I’m worried if something were to happen that I will not be able to do something immediately. That I will have to wait for my sister to take care of it. I’m stuck between a rock and a hard place. Rest assured I am doing what I can to make him as comfortable as possible. Hmmm. Maybe I can get my sister to come over to stay with him so I can have a couple of days off. :)
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I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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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.
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).
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.
Good luck.
A diagnosis can help you know a 'label' but it seems you need practical help, diagnosis or not.
What about your local council. Do they have an aging service to call & obtain a needs assessment? Find out what aging home help services are available, how to apply, how to get actual people to come & help you. Help your Father with bathing if required, or help you with chores, or provide supervision so you get a break.
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.
1: If you do not have a medical PoA and/or a financial PoA get it before anything else.
1A: you will be able to either pull one by google search, or go to his financial institution, they have the forms or go to an elder law attorney (could be costly) and not necessary unless you are expecting some push back from other family members. You will need a witness and have it notarized with your father present.
1B: get a medical PoA again you can google search it or his Dr. will be able to provide you one. Again you will need a witness and have it notarized.
Is there a reason you want a diagnosis? If it is just to confirm the dementia you truly do not need a neuro; it is just extra costs and trips to Drs and a lot more stress on your father. Geriatricians are primary care physicians who specialize in older adult. They are able to diagnose dementia as well as other existing medical issues and will not require a referral.
2: Call your local Senior Services and local Senior Agency on Aging, they will guide you on how/where to get some assistance for both you and your father.
3: google search Teepa Snow and watch her videos, it will help you understand what you are dealing with and how to navigate it.
4: Sounds like you are starting to get burned out, you need to take care of yourself. I know it is not easy as I have been there done that.
If you or your father belongs to AARP they are a great resource and as someone else mentioned https://www.alz.org/
Best wishes to you.
I hope you find someone like her, but I know it isn’t always easy. Take care!
1. If your father is a veteran he may be entitled to additional funds from the VA called Aid and Dependence to help pay for his care.
2. The Department of Human Services may be able to offer community service aide assistance to help with his care.
3. The physician may be able to prescribe a medication to help slow the progression of the disease.
4. If Medicaid eligible, Medicaid might pay family members to take care of him.
5. This will also allow you to apply to be his financial Fiduciary and manage his SS and VA benefits.
If he agrees, ask him to allow you to be added to his bank accounts to help manage his funds and pay his bills. Before, he is officially diagnosed have him sign a Durable POA, in the presence of a Notary which allows you to take care of his financial business.
(I took my client there 20+ years ago; he is now quite well known, presenting on KQED / PBS stations all over the country. At least call his office for a referral. I presume he is quite expensive and backed up with patient requests.
https://www.amenclinics.com/brain-health/memory-loss-2/?keyword=dementia%20specialist&utm_source=google&utm_campaign=G_HighPriority_MemoryLoss_BOF_SRCH_NB_CONV_Evergreen_Standard&utm_medium=cpc&utm_content=20146131591-164129895034-696698609738&utm_term=dementia%20specialist&gad_source=1&gclid=Cj0KCQjw0ruyBhDuARIsANSZ3wo8B5kzgfvUCusxiD87A5UChcidhcwHKVOdguXATkPBNqIigJMUfm0aAmrXEALw_wcB
____________________
For insurance reasons (?) ... from my experience, medical providers usually do not say or diagnose "dementia." At least initially, they diagnose it as a TIA: transient ischemic attack.
See this website: https://www.mayoclinic.org/diseases-conditions/transient-ischemic-attack/symptoms-causes/syc-20355679
A transient ischemic attack (TIA) is a short period of symptoms similar to those of a stroke. It's caused by a brief blockage of blood flow to the brain. A TIA usually lasts only a few minutes and doesn't cause long-term damage.
However, a TIA may be a warning. About 1 in 3 people who has a TIA will eventually have a stroke, with about half occurring within a year after the TIA.
Often called a ministroke, a TIA can serve as both a warning of a future stroke and a chance to prevent it.
Gena / Touch Matters
My husband has Parkinson's related dementia and below are resources I have found extremely helpful not only to him but also me as his caregiver. You probably are not in our area so I am not suggesting traveling to these providers, but if you read their bio you may get a bit of insight about their qualifications and the kind of provider to try and find.
Geriatrician: https://doctors.prismahealth.org/provider/Prexa+Dolatrai+Naik/1214852
Neuropsychologist: https://doctors.prismahealth.org/provider/Myriam+J+Sollman/993674
I have read in the comments here you don't necessarily need to know the type, but I respectively disagree. Dr. Sollman explained to me there are several types of dementia and while there may not be a cure, it can be very helpful knowing more about how the dementia you are dealing with exhibits itself. Understanding that much of my husbands behaviors are typical patterns for PD related dementia has gone a long way to helping me be more patient as a caregiver. She even gave me names for certain types of behaviors that I then read more about to get even more information. For instance my husband often exhibits Motor Perseveration, Reduplicative Paramnesia, and Confabulation behaviors. Do not take this to mean all PD related dementia patients will have the same issues because as I have said so many times... all PD patients do not have the same journey. In fact other types of dementia may also exemplify these behaviors but it may show itself in a different manner. A neuropsychologist can customize the testing to help identify the current deficiencies a person is struggling with.
A friend was told her husband had PD related dementia and after proper testing, found out it was vascular dementia which progressed much faster the same as Lewey Body Dementia which is often misdiagnosed.
Most PCPs have limited experience or even training in dementia issues, so it may not be they don't care it may simply be they don't understand them. I highly recommend a geriatrician for everyone 65 and older...it has made a huge difference in our journey physically and dementia related.
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!
Rest assured I am doing what I can to make him as comfortable as possible. Hmmm. Maybe I can get my sister to come over to stay with him so I can have a couple of days off. :)