Tag Archives: elder attorney

The 10 things you must do after getting a dementia diagnosis.

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A walk through the park

It’s a shock to receive a dire prognosis. The day I listened to the doctor tell my husband that he had Alzheimer’s remains as one of those pivotal, earth-shaking moments that changed the course of my family’s life.

I’ve been hearing about more and more people, young and old, who are getting an Alzheimer’s diagnosis. It’s okay to cry, to throw a tantrum, and to feel numb. I remember calling my parents in disbelief and saying that my life wasn’t supposed to turn out this way. I was only 48 years old. I lost my spouse at 58. Now at 71, I look back and see how far I’ve come. Ten years of navigating the Alzheimer’s world, taking care of my husband, having him live in a memory care home, and seeing it through until the end, definitely took a toll on me — physically and emotionally. I still tear up when I think about it.

Whether you are the caregiver or the person who has dementia, the important thing to tell yourself is that you will get through this. But there are things you must do — starting today — to help yourself and your loved one(s).

  • Get in touch with your local Alzheimer’s Association. https://www.alz.org/ They are a godsend and do amazing work helping caregivers and people with dementia, and funding research. Check out their education programs such as “Managing Money: A Caregiver’s Guide to Finances” https://training.alz.org/products/4355/managing-money-a-caregivers-guide-to-finances?_gl=1*ec354i*_ga*MTkxNzM3NzMxOS4xNzAzMDk3NDQ5*_ga_9JTEWVX24V*MTcwMzA5NzQ0OC4xLjEuMTcwMzA5NzU4MS4xOC4wLjA. Or, “Living with Alzheimer’s: For People with Alzheimer’s Disease.”
  • Make an appointment with an elder attorney to figure out how to best plan for the future. (http://National Academy of Elder Law Attorneys). As soon as possible, designate who will be your powers of attorney, including durable general power of attorney and medical power of attorney. Put a lot of thought into it. You want to make sure the people you put your trust in are people you know will have your best interests and wishes in mind.
  • Consult with a professional about long-term care Medicaid to see if you qualify and what you might do to qualify if you currently don’t. Making these plans while you or your loved one are still able to is a great gift.
  • Enlist family members and neighbors who you can count on to be helpful. Designate someone as an emergency contact. Share your contact information with them and let them know you might need their help at some point.
  • Share your feelings with your closest friends and family. Don’t do what I did and try to keep the diagnosis a secret. That became a huge stressor for me.
  • Consider adult daycare programs that provide care, companionship, and supervision during the day. To find out more about centers where you live, contact your local aging information and assistance provider or Area Agency on Aging (AAA). For help connecting to these agencies, contact the Eldercare Locator at 1-800-677-1116 or https://eldercare.acl.gov.
    The National Adult Day Services Association is a good source for general information about adult daycare centers, programs, and associations. Call 1-877-745-1440 or visit http://www.nadsa.org.
  • Schedule a weekly walk with a friend or neighbor. The exercise and socialization will do you good.
  • Remove area rugs from the house and other items that may pose a fall risk. And make sure there is sufficient lighting in the house.
  • Do everything you can to reduce stress. Have a family meeting in which everyone can participate in the sharing of care. It’s important to divvy up tasks because there will be plenty of them in the long, fraught Alzheimer’s journey. Even if someone lives across the country, that person can share the responsibility of calling in prescription drugs, ordering food to be delivered, setting up appointments, etc.
  • Stay engaged in activities that you’ve always enjoyed. Dance, sing in a choir, play an instrument, garden, play a sport or cards. Alzheimer’s and other dementias are not contagious. Enjoy your life the best way you can by staying engaged in your favorite activities for as long as possible.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How to create a caregiving plan and a personal care agreement

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Estate Plan, Living Will, and Healthcare Power of Attorney documents

Whether your loved one is newly diagnosed or at the end of their life, having a caregiver plan is crucial for determining what needs to be done in order to manage the health and well-being of the patient. It helps reduce panic and stress when a crisis occurs and helps get the patient the help they need in a timely manner. It also gives the caregiver peace of mind knowing that you are in control of things.

What does a caregiver plan look like?

A care plan is a form that summarizes a person’s health conditions and current treatments for their care. A care plan can help reduce emergency room visits, and hospitalizations, and improve medical management for people with chronic health conditions. Care plans also offer supportive resources for the caregiver, helping to reduce your stress. It includes information about:

  • Health conditions
  • Medications
  • Healthcare providers
  • Emergency contacts
  • Caregiver resources

Here’s a template for you to print and fill out. https://www.cdc.gov/aging/caregiving/pdf/Complete-Care-Plan-Form-508.pdf

If you prefer to create your own care plan, be sure to include the following and put it in a folder or 3-ring notebook so you can update it as needed. It’s also a good idea to keep copies of the important documents in your car glove compartment in case you need to get to the hospital quickly.

  • Emergency contacts: name, relationship, and phone numbers
  • A medical power of attorney: name and phone number, including documentation
  • Medical history
  • Family medical history
  • Allergies
  • Current prescription medicines, supplements, and over-the-counter medications including name, dosage, and schedule of administration
  • Physicians: primary care and all specialists listing the name and phone number
  • Advance directives copy
  • DO NOT RESUSCITATE order, if the patient has one
  • Medical insurance cards – private, Medicare and secondary, or Medicaid copies
  • Driver’s license or government-issued ID – copy

What is a personal care agreement?

This is actually an agreement between the person who needs care and the person who is providing care for compensation. It’s typically used in a relationship between the person who needs care and a family member, friend, or professional care person. Here’s a template that you can use. https://www.agingcare.com/documents/personal_care_agreement_agingcare.pdf

The following is adapted from a piece written by K. Gabriel Heiser on the AgingCare website. https://www.agingcare.com/articles/personal-care-agreements-compensate-family-caregivers-181562.htm

Personal care agreements are required to include the following in order to avoid the transfer of money which would be considered a gift by Medicaid:

  • The agreement must be put in writing before the personal care services are provided.
  • The agreement must detail which services are included and which are excluded for the purposes of compensation (e.g. non-medical care only, food shopping and meal preparation, light housekeeping, assistance with daily living activities, transportation to dental, adult day care and medical appointments).
  • The agreement must be signed by the care recipient and the person agreeing to perform the services. If the recipient is unable to sign due to mental or physical incapacity, their power of attorney may sign on their behalf.
  • All signatures on the contractual agreement must be notarized at the time of signing.
  • The agreement must include a contract date.
  • It must specify rates for services that are comparable to the rates charged by commercial care providers located in the same vicinity.
  • How much and when the caregiver will be compensated should be included.

The caregiver must keep an accurate record of which and when services they provide, and a log of payments they receive. This documentation is very important if the care recipient ever needs to file a Medicaid application because it proves that they have given this money in exchange for care services and not given it away to obtain financial eligibility for long-term care covered by Medicaid.

It’s important to check on the payment requirements in your state. These contracts typically require that the care provider are paid on a weekly basis, or a more flexible pay-as-you-go basis. Some states permit lump sum payments to cover future care for the remainder of a care recipient’s lifetime. If you decide on this arrangement, it’s advised that you consult an elder law attorney or legal professional with Medicaid planning expertise.

Resources

Family Caregiver Alliance
National Center on Caregiving
(415) 434-3388 | (800) 445-8106
Website: www.caregiver.org
E-mail: info@caregiver.org
FCA CareNav: https://fca.cacrc.org/login
Services by State: https://www.caregiver.org/connecting-caregivers/services-by-state/

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues, and provides assistance in the development of public and private programs for caregivers.

Medicaid
www.medicaid.gov

National Care Planning Council
www.longtermcarelink.net

National Academy of Elder Law Attorneys (NAELA)
For a low-cost 30-minute consultation, contact your local city or county Bar Association.
www.naela.org

Paperwork and related information

101 Law Forms for Personal Use (10th ed., 2016)
Elder Care Agreement
www.nolo.com

Long Term Care Personal Support Services Agreement
Department of Health and Human Services, Office for Family Independence (2011)
www.maine.gov/dhhs/ofi/documents/LTC-Personal-Support-Agreement.pdf

And don’t forget your own needs. Caregivers deal with an enormous amount of stress. Be sure to have a plan to take care of yourself because if you get sick, who will take care of your loved one?

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: TheCaregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How in the World Will I Pay for Long-term Caregiving?

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Financial planning is an important factor in long-term caregiving.

Having a long-term caregiving plan is a must for family caregivers, especially if their loved one has Alzheimer’s disease or other chronic health conditions. In 2018, the Alzheimer’s Association estimated that the total lifetime cost of care for someone with dementia was  $341,840.

When we placed my husband in a memory care home in 2008, it cost roughly $6,000 a month, which covered a private room and extras like a weekly massage. Everything is more expensive today. The Alzheimer’s Association lists the following median costs for long-term care services in 2021. From what I’ve seen, the costs are typically higher on the East and West Coasts and lower in rural towns, and in the Midwest, the South, and western states.

  • Home care: A paid non-medical home health aide is $24 per hour and $960 per week (40 hours of care).
  • Adult day services: $74 per day.
  • Assisted living facilities: $4,300 per month or $51,600.
  • Private room in a nursing home: $290 per day or $105,850 per year.
  • Semi-private room in a nursing home: $225 per day or $93,075 per year. https://www.genworth.com/aging-and-you/finances/cost-of-care.html

What’s the difference between assisted living and a nursing home?

By the time a person with dementia is ready for a care facility, they need lots of assistance so it’s best to consider a home that offers memory care in a locked-down environment. Locked-down isn’t as bad as it sounds. It just means that the residents can’t leave the facility and wander off and get lost. The exterior doors are locked, but residents are usually free to roam the halls and go in and out of their rooms and living areas.

An assisted living home offers some care such as transportation to doctor appointments and help taking medications. And some offer designated living areas for people with dementia. But generally, residents in assisted living facilities are in fairly good health and are able to take care of their personal needs.

A nursing home provides medical care 24 hours a day. Meals are prepared by the staff, residents usually eat in a dining room, or in their own room, and care is provided ranging from help getting dressed and bathing, to rehabilitation from a fall or bone breakage.

People with dementia and Alzheimer’s disease are usually placed in memory care homes that cater to their particular needs. Memory care homes aren’t exactly nursing homes because not everyone with dementia has another physical illness. But the cost is comparable to that of a nursing home because of the amount of hands-on care that is needed, which includes bathing, brushing teeth and getting dressed, toileting, etc.

Consider respite care

Respite care provides short-term relief for primary caregivers. It can be a life savior when you’re at your wit’s end and “just can’t take it anymore.” There’s no need to feel guilty. All caregivers need a break in order to recharge, destress, and take care of their own needs—which is crucial to staying healthy.

Respite care can be provided at home, in a healthcare facility, or at an adult day center. It can be arranged for a few hours or for several days or weeks. For more information about respite care: https://www.nia.nih.gov/health/what-respite-care, https://archrespite.org/respitelocator

Financial help

As soon as you or a loved one is diagnosed with Alzheimer’s, or other dementia or chronic disease, make an appointment to see an elder attorney. They will inform you of your options and help with long-term planning.

For instance, in Colorado, in 2020, one month in a nursing home costs nearly $9,000. That’s more than $100,000 over the course of a year. Many elderly individuals spend down their life savings on nursing home costs so they can eventually qualify for financial assistance

If both spouses are living, and one of them is healthy, the healthy spouse can be left with little money on which to survive. An elder law attorney can help families avoid this unfortunate, but common, scenario.

The Community Spouse Resource Allowance is useful when there is concern the couple has too many assets to receive financial assistance from Medicaid to pay for long-term care. This particular allowance lets the healthy spouse keep a portion of the joint assets, up to $128,640 in 2020.

Another allowance, the Minimum Monthly Maintenance Needs Allowance, or MMMNA, lets a healthy spouse retain part of their ill spouse’s monthly income. ps://www.robinsonandhenry.com/colorado/estate-planning/medicaid-planning/?utm_term=&utm_campaign=&utm_source=adwords&utm_medium=ppc&hsa_tgt=&hsa_grp=&hsa_src=x&hsa_net=adwords&hsa_mt=&hsa_ver=3&hsa_ad=&hsa_acc=4376139444&hsa_kw=&hsa_cam=14487629423&gclid=Cj0KCQiAhMOMBhDhARIsAPVml-HXnbFv18MpGCumQd7lKb5xGoJ36cvPNwcdGqRFpgnWq63lYsSAYAkaAnCaEALw_wcB

If you plan to hire an elder attorney, please check reviews and ask for referrals for a competent elder attorney. Unfortunately, the elder attorney I hired made a mess of things for me and my family, and I had to hire an additional attorney to straighten things out.

Other options

• Call 800.827. 1000 or visit http://www.va.gov. In addition to Medicare, the person with dementia may qualify for a number of public programs. These programs provide income support or long-term care services to people who are eligible.

• Contact your local family and senior services office. They can provide you with information about help in the home, long-term care options, legal support, Medicare and Medicaid, public assistance benefits, services, and programs, guidance, and tips on accessing services, caregiver support training, and more.

• Contact your local Alzheimer’s Association for information about services and support groups. They offer classes for caregiving on everything ranging from financial planning to how to get your loved one to take a shower. https://www.alz.org/

Taking time for yourself

Caregivers get burned out if they don’t take some time off to recharge. And in the worst-case scenarios, caregivers end up being sick and having to be taken care of. If you don’t take care of yourself, who will take care of the person you were lovingly taking care of?

Here are links to a couple of articles I posted on this blog about ways that caregivers can achieve more peace and less stress. https://archrespite.org/respitelocator, https://barbracohn.com/2020/06/23/20-natural-remedies-for-depressed-caregivers-and-everyone-else/

Have a safe, satisfying, and stress-free (as much as possible) Thanksgiving. And please take a little respite time for yourself, even if that entails just walking around the block for 30 minutes.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.