Is there an organization that can help guide us through getting help for our father who is showing signs of moderate dementia? We don't even know where to start.
Plenty of good answers here, but let me add a little. First of all, what is causing the dementia? His GP is a start here, followed by a neurologist to confirm the cause. If the dementia is from an accident or injury the treatment is different, and it needs to be determined what you are dealing with. If there appears to be no cause, it is likely that the neurologist would diagnose Alzheimer's. and you need to consider that the dementia is progressive without any cure (as of now) and he will need increasing level of personal health care for the rest of his life, which may be short or long. Let me hope that he has a family that is reasonable functional and interested in his well-being, which from the nature of your question is true. Someone, preferably in the family, needs to be appointed his POA for business purposes, and also he needs a Health Care POA, between these two people (or it could be one individual) his living expenses and management of his finances, his medical decisions and so forth can be assumed so that they can continue to support him when he is no longer able to function for himself. Can he live at home and continue to live there with help from Home Health Aides as required? This is better for his life and happiness than placing him in a facility - adult living, assisted living, rest home, or whatever. Having a reasonably sized home in good condition is very valuable at this point, and much less expensive than a facility. You need to be aware of behavior changes, which can be difficult to manage, such as wandering out of the house, not going to bed, not dressing properly, not taking care of his hygienic needs. The book "Thirty Six hour Day" is helpful here, as well as other resources like Alzheimer's Association and local networks of care-givers, besides his GP. At some point his GP may suggest that he be referred to a Hospice service, who will keep track of his condition and take over the medicinal needs with a focus on his comfort and also your needs as care givers. Hospice generally would take over in the final six months of life, or until the end.
It is a wearisome condition because it is progressive, but can take years to reach the end of life. So as it goes along in stages, your focus is on his well-being and happiness, and you should not neglect yourself and having some occasional time off. You will need it! And it may change your life, even spiritually, in the end to have helped someone fight the final battle.
36 Hour Day is a very good place to start. You'll want to get a diagnosis from his doctor. And then there is the paperwork as mentioned below. Before you start looking to move him, be sure it is necessary. People can continue to live for awhile in their situation with proper supports. You just need to know what those are.
I would suggest contacting your local area agency on Aging regarding resources for caregiving. Another good resource is the Alzheimer's Association. There also is a book titled the "36 Hour Day" which also has a lot of information. His primary care physician may also be able to provide information. "A Place for Mom" may be useful too. Good luck.
Whatever paperwork you need to manage his affairs - everything - needs to be done NOW and be careful that you don't do anything shady that your siblings or other family members are going to address now or at a later date. Then go to regular doctor for eval or ask for referral to a dr who specializes in dementia.
My suggestion. See family doctor. Get your/his/her financial situation under control and well understood. Get wills nailed down. Get POA's completed. Get a list of all medications and what they are used for. Take loved one to the dentist. Also see the dentist yourself. Get doctor, or expert, to diagnose if really dementia or just a reaction to medicine or uti. If dementia then what kind and at what level. That will give you a base to start from. Once you have the data then look for help from your local ALZ organization, senior services, or any number of help groups for in home care. Then check for outside care or assisted living. Make a plan to care for yourself. Really important. This can be a slow progression. It is insidious. Caregiving can sap your strength and your vigor. You need to remain healthy for your loved one. Find someone to confide in. If no one then use this forum. Good luck.
There are people out there that actually look for places for and with you! I found them to be a blessing. I also found that a large residential home with 6 to 12 residents was the best for my Mom. If he or your Mom were in the military during a time of war, he can get Aid and Attendance to help. I don't know if the amount has changed...but my Mom received approx $1200.00 per month. I don't know of any place that doesn't accept that, but many do not accept Medicaid. These people that help you look, know all about this and so much more. God bless you...I feel your pain.
I did not get much help anywhere when mom started getting symptoms. I took care of her and she lived 15 years later and 2 years of hospice, which I used for labs and routine medications only.
If they are still cognizant make sure you see an eldercare attorney to get financial matters sorted out, sharing bank account so you can access the money for BILLS, and power of attorney..and estate planning. By doing this you keep everything out of probate.
The Alzheimer's Association has good resources. Your local Senior Center also is a good place to start. Is your Dad a Veteran? if so the VA can help out and depending on where and when he served you may get a little more help or a LOT more help. Contact a local Veterans Assistance Commission office they can give you quite a bit of information and they do not charge for their services. The VA also has support groups. Is there an Adult Day Care in your area? If so they also have information that will be helpful. And if there is one I strongly suggest that you get dad going at least 2 times a week. And this probably should have been first. Find a good Elder Care Attorney and get all the paperwork started that you will need in the future. Discuss with dad now what he wants medically done in the future. There may come a time when the subject of Tube Feeding or Intubation comes up you need to know his wishes now and your mom as well as the whole family needs to be on the same page. (there is a document called a POLST that is much more comprehensive than a DNR this should be filled out) This is a long difficult journey, stay in touch.
Start by being friends on Facebook with HelpMeHelpMomma. Doug & Cindy Jones are elder law attorneys and both have been caregivers. They have a live cast today (Monday) at noon cst. They will provide valuable information to get you started on your journey.
First, a very good doctor for him who will work with YOU AND YOUR FAMILY. Do your research and find one who specializes in geriatrics and who will listen to you or whoever is seeing to his day to day care. People with dementia lie, e.g, they’re eating regular and nutritiously, have no pain, have no day to day problems, don’t get lost, know current events, have any health issues, etc.
Second, see an estate attorney. Get a financial power of attorney, a will, and discuss an irrevocable trust vs. a revocable trust. Hopefully, he will be able to understand he needs to put his “trust” in someone else to oversee his affairs. If he is a veteran, discuss getting Aid & Attendance now or at least get the information to complete an application so when needed, you can possibly get extra income for his care. YOU need to understand how assets need to be protected (in trust) for a period of time, like a house, as it relates to Medicaid costs for home care or assisted living.
Discuss with him his wishes insofar as an Advance Directive/Proxy/POA and a DNR.
Do not wait until his dementia has advanced too far to get estate issues done because he won’t understand them. Then you may not be able to manage his affairs unless he’s so ill you need to become his legal guardian.
Start a daily journal to keep track of his health. When he is good or bad or moody or however he is acting out. I give my mother’s doctor a memo a week before my mother’s appt. (so doc has a chance to review prior to appt). I lay it all out about how she’s acting, treating others, what she will eat or not, if she understands her medication and when she’s taking it or if someone else needs to be overseeing her medication. If you’re going to be his caregiver, or you and siblings, keep track of “I/we said-he said” so the doc can change his medication as necessary and track the progress of the disease.
Because, people with dementia lie. It’s normal. You can’t believe them because their brain is working differently now.
Educate yourself EVERY WAY YOU CAN about the disease or your going to start second guessing what you’ve done right or wrong and take fault where there is none.
Two very useful sites for me have been the Roslyn Carter Institute (especially webinars and caregiver resources) and Natalie Edmonds’ YouTube channel.
Lastly, you and your siblings learn who is going to take control and do it! Have a plan for his care. Don’t wait until he can’t reason or make good judgment for himself. Pay attention to how he responds to questions about his finances. Don’t wait for him to become combative and pushes assistance away because that will happen and someone needs to be in control when he crosses the line from can and can’t make logical decisions.
LEARN ABOUT WHAT INSURANCE, MEDICARE AND MEDICAID COVER OR DOESN'T COVER.
WHAT SERVICES ARE AVAILABLE IN HIS TOWN (delivery, transportation, meals, home care, etc)?
HAVE HIS HOME ASSESSED FOR SAFETY NEEDS (I used the local Council for Aging).
UNLESS YOU’RE RICH, ASK AROUND ABOUT THE BEST HOME CARE SERVICES BECAUSE ASSISTED LIVING IS EXPENSIVE.
LEARN ABOUT THE BIG GAP IN COVERAGE OF MEDICAL COSTS AND HOW COSTS WILL BE MANAGED (options)
But don’t put it off. Step up and get going because if his disease progresses fast, he will not be able to make the right decisions. AND DON’T WAIT TOO LONG TO TAKE HIS CAR KEYS AWAY!
First step is to speak with the doctor who I am sure can start putting you in the right direction. Then look up the local county Office on Aging - they are experts and there for seniors and they can help. Start looking into assisted living facilities and nursing homes. Also, locate and talk with an eldercare attorney. Make sure l00% of his personal/legal papers are in order, will made, etc. Ask questions and more questions and you will start putting it in order. Also call AARP which is a wonderful organization dedicated to seniors. Also talk to your religious leader. Get all kinds of information and suggestions. Make sure you have a power of attorney and a health care power of attorney in place. There is help available.
JanineL, BEFORE you take your dad for a cognitive exam, make sure he has all his legal ducks in a row: assigned person/s as durable PoA, create a Healthcare Directive, Living Will and Last Will. The reason being if he gets a diagnosis of dementia before he creates his legal groundwork, it can be contested, should this be an area of contention for any reason.
You say he is showing signs of dementia, but a UTI (which is extremely common in the elderly and incredibly frequent) can often have no other symptoms than what appears to be dementia-like behavior: confusion, change in personality, etc. It can be cleared up with antibiotics. So make sure he is checked for this at his cognitive exam. Once he gets checks and whatever the outcome is, he will be able to get the correct treatments, medications (if applicable) going forward. Good luck on this journey!
I cannot stress how important your advice is. We realized that my mother likely had dementia. My sister approached her to discuss POA and she totally wanted to have us handle that. My sister is the POA, she was already on my mother's accounts as co-owner. My sister took her to attorney who interviewed her and determined she was competent to make the decision and the POA was executed. We did then have her evaluated at a memory center and it was confirmed that she has ALZ-type dementia with alcohol abuse and she was not safe to live alone. We did it in this order accidentally and did not realize that if we had done it the other way, she would not have been able to designate POA. This became important when we worked on moving her to a facility and using her funds to pay for her care. Our brother became very hostile and challenged everything, wanting an accounting of her monthly expenses etc. He was not entitled to this information and he has since settled down but having the POA for healthcare and financing in place was so important. It would have been much more difficult otherwise.
The Alzheimer's Association is a good place to start. If your dad is a Veteran the VA has programs and support groups that might help. Look in your area for Adult Day Care programs. They also will have people and support groups that you can get lost of information from. Your local Senior Center or Senior Services will be able to answer a lot of questions and may be aware of other programs that you could take advantage of.
And while you say he is showing signs has he been diagnosed? A visit to a Neuropsychologist is a place to start or a neurologist. Next stop would be to see an Elder Care Attorney so you can begin to get paperwork in order for what is to come. POA for Health, Finances. Trusts if necessary Is there a possibility later that you will have to apply for Medicaid for him? If so now is the time to plan for that.
It is a wearisome condition because it is progressive, but can take years to reach the end of life. So as it goes along in stages, your focus is on his well-being and happiness, and you should not neglect yourself and having some occasional time off. You will need it! And it may change your life, even spiritually, in the end to have helped someone fight the final battle.
God bless you...I feel your pain.
If they are still cognizant make sure you see an eldercare attorney to get financial matters sorted out, sharing bank account so you can access the money for BILLS, and power of attorney..and estate planning. By doing this you keep everything out of probate.
Your local Senior Center also is a good place to start.
Is your Dad a Veteran? if so the VA can help out and depending on where and when he served you may get a little more help or a LOT more help. Contact a local Veterans Assistance Commission office they can give you quite a bit of information and they do not charge for their services. The VA also has support groups.
Is there an Adult Day Care in your area? If so they also have information that will be helpful. And if there is one I strongly suggest that you get dad going at least 2 times a week.
And this probably should have been first. Find a good Elder Care Attorney and get all the paperwork started that you will need in the future.
Discuss with dad now what he wants medically done in the future. There may come a time when the subject of Tube Feeding or Intubation comes up you need to know his wishes now and your mom as well as the whole family needs to be on the same page. (there is a document called a POLST that is much more comprehensive than a DNR this should be filled out)
This is a long difficult journey, stay in touch.
Second, see an estate attorney. Get a financial power of attorney, a will, and discuss an irrevocable trust vs. a revocable trust. Hopefully, he will be able to understand he needs to put his “trust” in someone else to oversee his affairs. If he is a veteran, discuss getting Aid & Attendance now or at least get the information to complete an application so when needed, you can possibly get extra income for his care. YOU need to understand how assets need to be protected (in trust) for a period of time, like a house, as it relates to Medicaid costs for home care or assisted living.
Discuss with him his wishes insofar as an Advance Directive/Proxy/POA and a DNR.
Do not wait until his dementia has advanced too far to get estate issues done because he won’t understand them. Then you may not be able to manage his affairs unless he’s so ill you need to become his legal guardian.
Start a daily journal to keep track of his health. When he is good or bad or moody or however he is acting out. I give my mother’s doctor a memo a week before my mother’s appt. (so doc has a chance to review prior to appt). I lay it all out about how she’s acting, treating others, what she will eat or not, if she understands her medication and when she’s taking it or if someone else needs to be overseeing her medication. If you’re going to be his caregiver, or you and siblings, keep track of “I/we said-he said” so the doc can change his medication as necessary and track the progress of the disease.
Because, people with dementia lie. It’s normal. You can’t believe them because their brain is working differently now.
Educate yourself EVERY WAY YOU CAN about the disease or your going to start second guessing what you’ve done right or wrong and take fault where there is none.
Two very useful sites for me have been the Roslyn Carter Institute (especially webinars and caregiver resources) and Natalie Edmonds’ YouTube channel.
Lastly, you and your siblings learn who is going to take control and do it! Have a plan for his care. Don’t wait until he can’t reason or make good judgment for himself. Pay attention to how he responds to questions about his finances. Don’t wait for him to become combative and pushes assistance away because that will happen and someone needs to be in control when he crosses the line from can and can’t make logical decisions.
LEARN ABOUT WHAT INSURANCE, MEDICARE AND MEDICAID COVER OR DOESN'T COVER.
WHAT SERVICES ARE AVAILABLE IN HIS TOWN (delivery, transportation, meals, home care, etc)?
HAVE HIS HOME ASSESSED FOR SAFETY NEEDS (I used the local Council for Aging).
UNLESS YOU’RE RICH, ASK AROUND ABOUT THE BEST HOME CARE SERVICES BECAUSE ASSISTED LIVING IS EXPENSIVE.
LEARN ABOUT THE BIG GAP IN COVERAGE OF MEDICAL COSTS AND HOW COSTS WILL BE MANAGED (options)
But don’t put it off. Step up and get going because if his disease progresses fast, he will not be able to make the right decisions. AND DON’T WAIT TOO LONG TO TAKE HIS CAR KEYS AWAY!
You say he is showing signs of dementia, but a UTI (which is extremely common in the elderly and incredibly frequent) can often have no other symptoms than what appears to be dementia-like behavior: confusion, change in personality, etc. It can be cleared up with antibiotics. So make sure he is checked for this at his cognitive exam. Once he gets checks and whatever the outcome is, he will be able to get the correct treatments, medications (if applicable) going forward. Good luck on this journey!
If your dad is a Veteran the VA has programs and support groups that might help.
Look in your area for Adult Day Care programs. They also will have people and support groups that you can get lost of information from.
Your local Senior Center or Senior Services will be able to answer a lot of questions and may be aware of other programs that you could take advantage of.
And while you say he is showing signs has he been diagnosed?
A visit to a Neuropsychologist is a place to start or a neurologist.
Next stop would be to see an Elder Care Attorney so you can begin to get paperwork in order for what is to come.
POA for Health, Finances.
Trusts if necessary
Is there a possibility later that you will have to apply for Medicaid for him? If so now is the time to plan for that.