Monthly Archives: June 2021

10 ways to get siblings to help with the care of a parent

Posted on by
Reply
Family caregiver meeting

Today, June 20, is the longest day and for families in the throes of Alzheimer’s, it probably won’t seem any different than most days. Every day that you spend caring for a loved one whose needs are demanding is the “longest day.” In order to reduce the burden on yourself, it’s imperative that you carve out some “me time” each day. You’ve heard it before, but it is worth repeating: You need to take care of yourself, because if you get sick who will take care of your loved one?

Sharing the care

If you’re caring for a parent, have you had a conversation with your siblings about sharing the responsibility? Family dynamics and unresolved issues can make it harder to get everyone to pitch in. And of course, location makes a huge difference. An adult child who lives nearby the parent needing help, typically bears the brunt of the responsibility. In fact, a study done by the National Health and Aging Trends (2011-2017) found that three quarters of older adults reported receiving help from only one child.

In order to avoid resentment, divvy up the tasks.

Here’s how

  1. Have a family meeting. If there already is conflict and disagreement among siblings, find a professional to facilitate the meeting in a neutral place, such as a library meeting room, a church, mosque, temple, or synagogue, etc. If the parent being cared for wants to be included and is cognitively aware, include them.
  2. Introduce the purpose of the meeting and have an agenda. Begin with facts such a “Mom or Dad needs full-time care.” Or, “it’s time to move Mom or Dad to a memory care because she/he needs more care than I can provide.” Or, “Mom or Dad is still able to stay at home, but needs assistance. How can each of us help?”
  3. To clarify the situation, maybe include a doctor or nurse explain the medical issues and forecast what the future will look like.
  4. Next, discuss the care plan. Who can provide hands-on care at home? What kind of financial contribution can everyone provide? If the parent can remain at home, split up the day-to-day tasks such as grocery shopping, meal preparation, rides to the doctor, picking up medications, providing companionship, housecleaning, yard-care, etc.
  5. Acknowledge everyone’s feelings. Individuals will be at different places in their own lives. One sibling may be a new parent. Another may have lost their job. Or a sibling may live thousands of miles away. Or a sibling may be angry at a parent and not want to be involved at all. In these cases, ask gently if there is anything they can do to lighten the load for the others.
  6. If your parents have planned for retirement and were proactive about estate planning, your task will be easier than if they haven’t. Have them help you find the appropriate papers and resources as soon as possible while they are capable. Get the names and contact information for their legal professionals and make sure someone has been designated as power of attorney and durable medical power of attorney. If your parents have not done due diligence in sorting out their affairs and they are still able to, you need to stress the importance of doing so immediately. This is extremely important in the care of a parent. A sibling who is not involved in the hands-on care should be assigned this task.
  7. We’ve all become zoom experts in the past year and a half. Schedule monthly caregiver meetings so everyone stays informed about your parent’s needs. If a new care plan is needed, discuss the details.
  8. Make sure there is a point person for emergencies. Connect the family on “WhatsApp.”
  9. Take advantage of local resource such as Meals on Wheels and adult day programs.
  10. If siblings are unwilling to cooperate or if the situation escalates into an unmanageable situation, seek help. Call your local Area Agency on Aging. For more information, call the Family Caregiver Alliance, 800-445-8106 or visit http://www.caregiver.org and click on Family Care Navigator.

Express appreciation for any help your family is able to provide. Accept your siblings for who they are and understand that not everyone will agree with everyone’s opinion. Sharing the care for parents can either drive a wedge between siblings or bring them closer. Hopefully you’ll be able to communicate like adults and understand each other’s needs during the trying and stressful period that requires parenting our parents.

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.

If you suspect that you or a loved one has Alzheimer’s, you need to read this.

Posted on by
Reply

June is Alzheimer’s and Brain Awareness Month. If you suspect that you or a loved one might have Alzheimer’s disease, here’s what you need to know.

After decades of not making progress with pharmaceuticals for Alzheimer’s disease, researchers are finally coming up with some promising results. There’s a brand new blood test for the disease that you can take instead of going through a series of expensive and sometimes painful tests. And there’s a brand new drug that delays cognitive decline in early stage Alzheimer’s. We still don’t have a cure, but there are a number of clinical trials that someone diagnosed with Alzheimer’s can enroll in.

Why it’s important to get diagnosed early

For a full explanation, click here to read a blog I posted August, 20202. https://barbracohn.com/blog/page/2/

Here are the bullet points:

  • Cognitive problems can be caused by a number of physical conditions.
  • Cognitive symptoms may be reversible.
  • An early diagnosis is empowering as far as estate planning, and end-of-life planning, etc.
  • An early diagnosis is easier for the physician to make when the patient is able to answer questions.
  • Family and loved ones might be confused by particular behaviors which will be explained.
  • An early diagnosis allows individuals to take advantage of support groups, and caregivers to learn ways to better manage medications, the environment, etc.
  • Getting an early diagnosis provides the opportunity to enroll in a clinical trial.
  • The patient can prioritize what is important to them while they are still able to make decisions.

What new tests are available to detect Alzheimer’s?

PrecivityAD is the first blood test for Alzheimer’s to be cleared for widespread use and one of a new generation of such assays that could enable early detection of the leading neurodegenerative disease—perhaps decades before the onset of the first symptoms. The test uses mass spectrometry to detect specific types of beta-amyloid, the protein fragment that is the culprit in Alzheimer’s disease. As plaques in the brain build up, levels of beta-amyloid decline in the surrounding fluid. The levels can be measured in spinal fluid samples. The new blood test can determine where beta-amyloid concentrations are significantly lower. PrecivityAd is designed to be used for people 60 to 91 years old with early signs of cognitive impairment.

How it works

  • Your doctor orders the PrecivityAd blood test and schedules a blood draw appointment.
  • Your blood sample is sent to the lab for analysis by mass spectrometry.
  • Your doctor receives the report and discusses the results with you.

How much does it cost?

The test costs $1,250. Since it is new and is not currently covered by private insurance, Medicare or Medicaid, patients must pay out-of-pocket for the test. A six-month interest-free payment plan is available, and a financial assistance program is available for patients who medically and financially qualify. The assistance program can bring the costs down to between $25 and $400 for eligible patients.

Other causes for memory issues

One benefit of the PrecivityADTM blood test is that if Alzheimer’s markers
are not detected, additional costly tests may be avoidable and your physician can explore other causes for memory and cognitive issues. Other causes for memory issues include: hypothyroidism, head trauma or injury, certain medications or a combination of medications, emotional disorders, depression, strokes, amnesia, alcoholism, vitamin B012 deficiency, hydrocephalus, brain tumors, and other brain diseases.

New drug for delaying symptoms

The FDA recently approved a new drug for Alzheimer’s. Aducanumab isn’t a cure, but it’s the first drug to get this far in an approval process that actually modifies the underlying pathology of the disease, and helps delay cognitive decline in early stage Alzheimer’s. Read about it in my last post. https://wordpress.com/post/barbracohn.com/6470

Clinical research studies for people with early symptomatic Alzheimer’s

The objective of a clinical research study is to answer questions about the safety and effectiveness of potential new medications. These studies have to be completed before a new treatment is offered to the public. There are currently more than 3000,000 clinical studies taking place throughout the world.

For those who are qualified, taking part in research studies offers several benefits:

  • Getting actively involved in their own health care
  • Having access to potentially new research treatments 
  • Having access to expert medical care for the condition being studied, since investigators are often specialists in the disease area being studied
  • Helping others by contributing to medical research

One way to find information about clinical trials is by searching this website: http://www.clinicaltrials.gov. ClinicalTrials.gov is an interactive online database, managed by the National Library of Medicine. It provides information about both federally and privately supported clinical research. ClinicalTrials.gov is updated regularly and offers information on each trial’s purpose, who is qualified to participate, locations, and phone numbers to call for more information.

The Alzheimer’s Association also has a service called TrialMatch that provides customized lists of clinical studies based on user-provider information. The free, easy-to-use platform allows you to see which studies are a good fit for you or a family member.
Visit TrialMatch. You can also call 800.272.3900 or email TrialMatch@alz.org to get started. You’re under no obligation to participate. You can reach out to researchers directly to sign up, or let researchers know that you are open to being contacted with more information about their study. You can also browse available clinical studies by location and type, or sign up to be notified when new studies are posted that are relevant to you.



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.