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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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
By proceeding, I agree that I understand the following disclosures:
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.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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.
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!
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.
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.
God bless you...I feel your pain.
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