Tag Archives: Alzheimer’s Association

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 to protect your loved ones from elder abuse during the coronavirus lockdown

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senior man covering his face with his hands. Depression and anxiety Copy space.World Elder Abuse Awareness Day is June 15. According to the World Health Organization elder abuse is a violation of human rights and a significant cause of illness, injury, loss of productivity, isolation, and despair. It touches people across all socioeconomic groups, cultures, and races. But only about one in five cases is ever reported. People with dementia are particularly vulnerable because they are unable to recognize that they are being abused or to report it.

This year during the coronavirus lockdown, there have been massive increases in reports of elder abuse ranging from financial scams to incidents of family violence. https://www.levinperconti.com/nursing-home-abuse/

The most vulnerable

Aging adults are highly susceptible to the deadly effects of COVID-19. Just knowing this, amps up anxiety levels and depressive symptoms in aging adults who might be isolated, lonely, and alienated from their families. Isolation and loneliness make the elderly even more vulnerable to scams, and to abuse by caregivers, neighbors, family and financial advisors.

Adults with mental disabilities and/or dementia who live in care facilities are exclusively cared for by staff who may not be in communication with family members. Family members have been restricted from entering the facilities in order to manage the spread of the virus. Consequently, family members are unable to see first-hand whether their loved one is being well cared for.

A news story recently reported that a son was shocked to learn that his father was severely dehydrated, hadn’t eaten for days, and was left in a dirty diaper for more than a couple days. The response he got from the facility was that they were short of staff because so many people were out sick.

Also, people who have diminished eye sight or hearing, or are confined to a wheel chair are vulnerable. My friend’s father who has macular degeneration and is hearing impaired was scammed out of thousands of dollars by a caller who claimed that she was his niece. She said that she was being held in jail and needed bond money. This type of family emergency scam has been going on for years via telephone calls.

We’ve all heard of telephone scams in which a caller claims he is a jailed grandson who pleads with his grandparents to send bail money, or the IRS scam where the caller threatens severe consequences if the senior doesn’t pay tardy taxes.

These types of occurrences are all too common, especially in under staffed, underfunded nursing homes.

Verify an emergency

If someone calls or sends a message claiming to be a family member or a friend desperate for money:

  • Resist the urge to act immediately, no matter how dramatic the story is.
  • Verify the person’s identity by asking questions that a stranger couldn’t possibly answer.
  • Call a phone number for your family member or friend that you know to be genuine.
  • Check the story out with someone else in your family or circle of friends, even if you’ve been told to keep it a secret.
  • Don’t wire money — or send a check or money order by overnight delivery or courier.
  • Report possible fraud at ftc.gov/complaint or by calling 1-877-FTC-HELP.
  •  Report COVID-19 related scams to the National Center for Disaster Fraud (1-866-720-5721)

Types of abuse

  • Physical–causing pain or injury
  • Neglect–failure to provide food, shelter, clothing, medical and other necessities required to provide a safe, nurturing environment
  • Emotional and Psychological—Verbal assaults, harassment, threats, intimidation
  • Confinement –restraining or isolating the person
  • Financial—Scams, misuse or withholding of the person’s financial resources to the disadvantage of the elderly person, and to the advantage of another person.
  • Deprivation—Denying the person medication, medical care, food, shelter or physical assistance
  • Sexual abuse –Any sexual activity, including fondling, when the person is unable to understand, unwilling to consent, or threatened or physically forced

Signs of abuse

  • Bruises, pressure marks, broken bones, abrasions and burns
  • Bruises around the breasts and genital area could indicate sexual abuse
  • Poor hygiene, bed sores, unattended medical needs, unusual weight loss
  • Sudden withdrawal from normal activities, unexpected depression, and a sudden change in alertness can be an indicator of emotional abuse. However, these symptoms can be the result of a progression of dementia or other disease.
  • Sudden changes in financial situation can be a result of exploitation.
  • Aggressive behavior from a caregiver or from the person being cared for can result in verbal or emotional abuse on either end.

Report abuse

Abuse can occur anywhere: at home, in nursing homes, and memory care homes. If you suspect abuse don’t hesitate to report it. You do not have to prove anything. It is up to the professional staff to investigate your suspicions, and put the proper safety measures in place.

If you suspect abuse, call the police or 911 immediately if you someone you know is in immediate or threatening danger.

Caregivers also are the recipients of abuse from the person they care for. If a caregiver feels physically threatened it’s important to get help in providing safe care for the person being cared for, possibly in a facility.

What can you do to protect yourself and your loved ones?

Report suspected mistreatment to your community’s Human Services Adult Protection agency and/or law enforcement office. Even if a situation has already been investigated, if you believe circumstances are getting worse, continue to speak out.

If you or others experience abuse or neglect in a community setting:

Report suspected abuse or exploitation to the local Adult Protective Services or Long-Term Care Ombudsman Program .

Human Services provides help with:

  • In-home assessment for abuse, neglect, and/or exploitation
  • Crisis intervention
  • Monthly visits by a case worker, if risk continues
  • Assistance with housing and/or placement to alternative housing
  • Assistance with obtaining benefits
  • Money management
  1. To report suspected abuse in a nursing home or long-term care facility, contact your local Long-Term Care Ombudsman. Each licensed long-term care facility is required to display a poster with the facility’s assigned ombudsman’s name and contact information. If you are a resident or family member of a resident in a facility, call the ombudsman listed on the poster. To learn more about the ombudsman program visit: Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes and assisted living facilities. http://www.ltcombudsman.org
  2. Caregivers (both family and professionals) are most often the abusers of the elderly. Stress and feelings of being overwhelmed may provoke unintentional belligerent feelings. If you feel overwhelmed or frustrated as a caregiver, talk to someone for support.
  3. To speak with an Alzheimer’s Association Care Consultant call: 1-800-272-3900
  4. To find a support group in your area visit http://www.alz.org/apps/findus.asp
  5. To receive support from other caregivers visit https://www.alzconnected.org/
  6. To report an incident or concern of abuse or neglect, call the Alzheimer’s Association (1.800.272.3900) or Eldercare Locator (1.800.677.1116). You’ll be connected to your state or local adult protective services division or to a long-term care ombudsman. You do not need to prove that abuse is occurring — it is up to the professionals to investigate suspicions.
  7. Read more: http://www.alz.org/care/alzheimers-dementia-elder-abuse.asp#ixzz2W9DhCbSL
  8. Keep in contact. Talk with your older friends, neighbors, and relatives. Maintaining communication will help decrease isolation, a risk factor for mistreatment. It will also provide a chance to talk about any problems they may be experiencing.
  9. Join Ageless Alliance, a national, non-profit grassroots organization working to promote aging with dignity and eliminate elder abuse, neglect and exploitation through Awareness, Advocacy and Action. Based at the Center of Excellence on Elder Abuse and Neglect at the University of California, Irvine, Ageless Alliance is a grassroots campaign to give a voice to those who have been affected by elder abuse and abuse of adults with disabilities.
  10. Plan ahead to protect against financial exploitation. Download a handout on ways to protect yourself or a loved one.http://www.ncea.aoa.gov/Resources/Publication/docs/NCEA_ProtectYourself_web508.pdf
  11. Be aware of the possibility of abuse. Look around and take note of what may be happening with your older neighbors and acquaintances. Do they seem lately to be withdrawn, nervous, fearful, sad, or anxious, especially around certain people, when they have not seemed so in the past?
  12. Contact your local Area Agency on Aging (AAA) office to identify local programs and sources of support, such as Meals on Wheels. These programs help elders to maintain health, well-being, and independence—a good defense against abuse. See the Eldercare Locator, www.eldercare.gov Welcome to the Eldercare Locator, a public service of the U.S. Administration on Aging connecting you to services for older adults and their families. You can also reach us at 1-800-677-1116.

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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.

The 20 most important things to consider when looking for a memory care home

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seniorenheim 6The day I moved my husband into a memory care home was the second worst day of my life. The worst day was the day he was diagnosed with Alzheimer’s. And both of those days were worse than the day he died.

After the diagnosis, I didn’t waste any time getting our finances sorted out, talking to an elder attorney about options, and learning about Medicare benefits. I did, however, wait a year before I contacted that Alzheimer’s Association. That was a mistake because this amazing association offers so much good information and support. So do yourself a favor and contact your local chapter and take advantage of all the free classes and support groups they offer.

After several years of caring for my husband at home, and downsizing to a more manageable home, I was advised to start looking for a memory care home in case an emergency situation arose.  I wanted to keep my husband at home as long as possible. But things happen, and in my case, I received a serious diagnosis. My doctor said that I needed to take care of myself and I listened to him. I got recommendations about a few homes in my town, found one I liked, and put my husband on the waiting list.

Many facilities will allow you to get on a waiting list. When your name gets to the top, you might have the option to refuse because you are not ready. In this case, you can move down the list but still have priority over someone who is recently added. Ask about this option.

The home where my husband lived for two years provided good care, but did not live up to the promise of caring for him until the end of his life. In fact, the last month of his life included several moves. After being discharged from the hospital, Morris was sent to a rehab center in a nursing home. It was not a good situation. The food was horrible, and the care was sorely inadequate. After two weeks, I begged the original home to take him back. They agreed to only if I hired additional one-on-one care. I did, but the cost was prohibitive. I moved him again after finding a wonderful end-stage Alzheimer’s unit down the hall from a hospice center. Morris received excellent compassionate care there the last two weeks of his life.

Here’s list of 20 things to look for and ask in your search for a memory care home:

  1. Look at your state’s Public Health and Environment website to see a facility’s number of beds, complaints, medical director, ombudsman’s phone number, and whether the home is Medicare and/or Medicaid certified. Here you can discover things like mishandling of narcotics (oxycodone), and theft of residents’ belongings, etc.
  2. What is the staff to patient ratio? During the day? At night?
  3. Is there a RN (registered nurse) always on the premises? Is a doctor always on call?
  4. How often does a medical doctor visit the facility?
  5. What level of care does the home provide? Can your loved one stay there until the end of his/her life? What if your loved one becomes non-ambulatory?
  6. Are three meals a day provided? What about special diets such as kosher, vegetarian, low-salt?
  7. What type of training has the staff received?
  8. What is the staff turn-over rate?
  9. What is the monthly rate for housing and care? What services does that rate include?
  10. Are rooms private or semi-private? How do prices vary for each?
  11. Is housekeeping and laundry provided? How often?
  12. What programs are offered? Social, educational, outings, exercise?
  13. How secure is the unit? Are residents locked in? Is there any chance a resident can leave and wander? Has this ever happened?
  14. What happens if the resident becomes aggressive or violent? Is he or she drugged? Given a warning that he or she must move out?
  15. What is the chain of communication for letting family members know what is going on with a loved one?
  16. What is the discharge policy?
  17. Are pets allowed?
  18. Are visiting hours limited or open?
  19. What is the protocol for a medical emergency?
  20. Visit the facility and look around. Are the staff appropriately dressed? Are they warm and friendly? Is the environment pleasing and clean? Does the executive director address residents by their name? Would you be comfortable having your loved one live there, and would you be comfortable spending many hours there?

No one ever wants to live in a nursing home or assisted living facility. But when your loved one needs more care than you can provide, is a danger to him or herself, or you, the caregiver, need to take care of yourself, a memory care home can provide a warm and loving option. Good luck finding one that suits your needs and the needs of your loved one.

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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.

What does end-stage Alzheimer’s and dementia look like?

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Brain disease with memory loss due to Dementia and Alzheimer’s illness

Nine years after my husband Morris was diagnosed with Alzheimer’s disease he developed a kidney stone. At that point he was still walking, but shuffling and sometimes losing his balance. He was speaking, although he often didn’t make any sense. He was laughing–sometimes. And he usually knew his family and friends. It was difficult for him to eat and he often didn’t know what he was eating. But mostly he fed himself.

The day he went to the emergency for severe pain from a kidney stone, Morris was propelled on a downward spiral into end-stage Alzheimer’s. He died six weeks later. In just a matter of days my husband lost his ability to walk, toilet, speak and eat by himself. He needed to be lifted out of bed into a wheel chair and spoon fed. The memory care home he had lived in for two years wouldn’t accept him back because he was no longer ambulatory.

Morris was released from the hospital on a Friday afternoon to a rehabilitation center for physical therapy, which attempted to help he walk–which he never did again. At the rehab center he didn’t sleep at night. The floor attendant kept him in a wheel chair in the hall so he wouldn’t get out of bed and fall. They ended up putting his mattress on the floor because he did fall out and required stitches on his forehead. He’d go days without sleep and my son-in-law predicted that the lack of sleep would get him in the end.

I moved Morris back to his original memory care home on the condition that I had to hire outside help. The rehab facility was understaffed and the food provided little nutrition. The first night I left him there I felt as though I was leaving him to the “wolves.”

When I first placed him in the memory care home two years previous to this time, I was promised that my husband could stay there throughout the course of his illness. So if you are planning to place a loved one in a home, read the contract very carefully.  After he was back at the home for a couple weeks I had to move him again because it was costing way too much at this point to pay the monthly bill of $6,000 dollars plus an additional hourly fee for the outside care agency. Morris lived only two more weeks in an end-stage hospice facility. The staff was top notch and compassionate and I’m grateful that I moved him there.

End-stage Alzheimer’s is not pretty.

It includes:

  • incontinence
  • difficulty eating and swallowing
  • loss of speech
  • inability to walk and get out of bed
  • total assistance with personal care
  • not recognizing family members—but not all the time
  • secondary illnesses
  • sleep issues or sleeping most of the time

What can you do?

  1. Make sure you have all your loved one’s legal and financial papers in place well before this stage. (durable power of attorney, will, trust, advance directives, DNR-do not resuscitate, etc., final arrangements-cremation or burial, memorial service, etc.)
  2. Ask family and friends for support, and be specific. Do you need help with yard maintenance or with walking your dog?
  3. Do you need someone to shovel the driveway or sidewalk if you are spending a lot of time with your loved one?
  4. Ask someone at your place of worship to set up a meal-train or to set up a CaringBridge account to keep friends and family abreast of the current situation.
  5. AFA–Alzheimer’s Foundation of America’s licensed social workers are available Monday through Friday, from 9am to 9 pm EST, and Saturdays from 9am to 1pm EST, via AFA’s National Toll-free helpline–866-232-8484. They are also available by e-mail, chat and Skype.
  6. The Alzheimer’s Association Helpline is open 24/7-800-272-3900.
  7. Hospital chaplains console families and help in times of grief and the difficult period of waiting for a loved one to recover or pass.
  8. Hospice offers support to the patient by providing personal services that include bathing, and palliative care. Hospice also offers grief counseling to families.
  9. It is important that as a caregiver you take care of yourself. On days that I was too exhausted to make dinner, I would heat a pan with a bit of olive oil, saute pre-washed spinach, and pour over a couple of eggs for a healthy, quick meal. Protein is important and so are greens that contain the stress-reducing nutrients vitamin B and magnesium. If you have difficulty eating because of nerves and emotions or time limitations, make yourself a protein shake with berries and/or a banana, a scoop of protein powder and liquid of your choice.
  10. Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.

Blessings to you, your family and 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: 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.