Category Archives: Alzheimer’s Association

15 Ways to Help You Deal with Caregiver Guilt

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You spend countless hours taking care of your loved one and have given up so many things. So why do you still feel guilty about not doing enough? Why do you continue to second-guess yourself?

You may ask yourself Am I doing enough? Did I make the right decision? What if… what if…? Here are ways to recognize your feelings, tips for accepting them, and ways to forgive yourself.

Why do you feel guilty?

  • Do you feel that you aren’t doing enough for your care recipient? Make a list of everything you do for the person you care for. Preparing a meal, shopping for groceries, driving to appointments, making a bed, doing laundry, making a phone call, sitting next to the person, even just giving a hug: the list adds up! You are doing a lot more than you think you are!
  • Are you guilty about your negative feelings? Resentment, anger, and grief are all normal. They are just feelings and they aren’t wrong. Feelings are complicated and you are entitled to them. You probably love the person you are caring for but the time you spend is precious and you might rather be outside gardening or hiking or traveling.
  • Do you feel bad about taking time for yourself? Don’t! If you don’t stay well, including eating and sleeping well, there’s a good chance you will get sick. And that is not going to help anyone! Please take some time for yourself. If you are a full-time caregiver, at least take a 15-minute walk every day. Get some respite care. Your local county social services department can most likely provide you with some options for help.
  • Are you feeling inadequate as a caregiver? The Alzheimer’s Association offers free classes on caregiving. “The Savvy Caregiver” is an excellent five-session class for family caregivers. It helps caregivers better understand the changes their loved ones are experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.
  • Do you resent losing personal time for meeting with friends, exercising, painting, playing an instrument, or traveling? It’s normal and natural to feel like you’re missing out on the things that bring you enjoyment. Try to carve out at least an hour or two a week where you can do whatever you want to do.
  • Do you have unresolved issues that stem from your childhood that get in the way of your feelings for the person you’re caring for now?
  • Are you comparing yourself to other caregivers? For instance, if you’re in a caregiver group you may be in awe of the amount of time another caregiver spends taking care of a spouse or how many hours she sits next to her husband in a memory care home. You are YOU, you’re unique and have different needs, a different history, and a different relationship with the person you’re caring for. Don’t compare yourself with anyone.
  • Do you have past unresolved issues with the person you’re caring for?

Tips for easing guilt

  • Ask yourself what’s bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergyperson, spiritual teacher, or intuitive guide. Talk about your guilt until you feel your body release the tension that is stored in your muscles and cells.
  • Remember that you are human and not perfect. No one expects you to perform with absolute clarity and grace all the time.
  • You cannot control everything all the time. You are doing the best that you can with the information, strength, and inner resources that you have.
  • Join a support group. Caregivers share many of the same problems and issues. A support group meeting can be a safe place where you will not be judged.
  • Have an “empty chair” dialogue by speaking out loud and pretending that your care partner is in the chair next to you. Express your feelings openly and wholeheartedly. Ask for forgiveness if you feel that you wronged your loved one in any way.
  • Write down your thoughts and feelings. Journaling is a wonderful, inexpensive way to release your concerns and worries on paper. It’s available when your therapist and best friend are not, and you can do it anywhere at your leisure.
  • Strong feelings of guilt, remorse, and grief will diminish over time.  If they continue to haunt you, seek professional help.

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 would you rate yourself as a caregiver?

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It’s been 12 years since my husband passed away from younger-onset Alzheimer’s disease. Even now ask myself if I could have done more for him. I still have guilt, even though I saw a therapist for the last three years of his life who said to me, “If a friend were telling you what you’re telling me, what would you say to her?”

I’d tell her, “You’re doing the best that you can.” My therapist nodded his head and reminded me that I was doing the very best that I knew how, and physically was able to.

I was pragmatic and philosophical about my husband’s Alzheimer’s. I was really good about taking him to his doctor appointments and utilizing every complementary healing modality that was available, such as acupuncture, massage, and even some pretty far-out techniques which I don’t even remember the name of. We hired gentle-touch practitioners, psychic healers, and astrologers. You name it. We tried them all. I even bought an expensive stress-reducing massage bed that emits infrared light and has jade balls that massage the spine by riding from the neck to the ankles.

Did these modalities help? I think so. They certainly helped reduce the stress that we both felt. Did they delay the symptoms of Alzheimer’s? Probably not, but my husband outlived his prognosis by two years, according to his doctor, so I have to believe that a good diet, nutritional supplements, and the support of loving friends and family played a huge role.

Yet, still, I think there were a few things I could have done better. I could have worked harder to acknowledge Morris’s reality. By that I mean I could have done a better job of redirecting him when he got anxious or worried. I realize that it’s easier to say this now, more than a decade after he died. But I wish I had more skill and practice in switching the topic from his obsession about having his car keys taken away, or his discomfort when I’d take him for a ride in the car and he’d complain about every bump in the road.

I wish I had shown him more affection by holding his hand or rubbing his shoulders. I actually told him one day at the breakfast table that I could not have an intimate physical relationship with him anymore because I felt more like his mother than his wife. This is a hard thing for me to admit, and I feel so sad that I said this to him. The reason I’m writing it here is to tell you that you don’t have to be 100% honest with what you express to the loved one you are caring for. It’s okay to withhold things because if your loved one has dementia s/he is already having difficulties processing normal everyday activities. There’s no need to get into a deep philosophical discussion or one in which you have to express what you are going through. Create a time and space for that to happen with a dear friend or a therapist.

If you feel guilty or are unsure of whether you’re doing enough ask yourself these questions:

  • Do you feel that you aren’t doing enough for your care recipient? Make a list of everything you do for the person you care for. Preparing a meal, shopping for groceries, driving to appointments, making a bed, doing laundry, making a phone call, sitting next to the person, even just giving a hug: the list adds up! You are doing a lot more than you think you are!
  • Are you guilty about your negative feelings? Resentment, anger, and grief are all normal. They are just feelings and they aren’t wrong. Feelings are complicated and you are entitled to them. You probably love the person you are caring for but the time you spend is precious and you might rather be outside gardening or hiking or traveling.
  • Do you feel bad about taking time for yourself? Don’t! If you don’t stay well, including eating and sleeping well, there’s a good chance you will get sick. And that is not going to help anyone! Please take some time for yourself. If you are a full-time caregiver, at least take a 15-minute walk every day. Get some respite care. Your local county social services department can most likely provide you with some options for help.
  • Are you feeling inadequate at a caregiver? The Alzheimer’s Association offers free classes on caregiving. “The Savvy Caregiver” is an excellent five-session class for family caregivers. It helps caregivers better understand the changes their loved ones are experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.
  • Tips for easing guilt
  • Ask yourself what is bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergyperson, spiritual teacher, or intuitive guide. Talk about your guilt until you feel your body release the tension that is stored in your muscles and cells.
  • Remember that you are human and not perfect. No one expects you to perform with absolute clarity and grace all the time.
  • You cannot control everything all the time. You are doing the best that you can with the information, strength, and inner resources that you have.
  • Have an “empty chair” dialogue by speaking out loud and pretending that your care partner is in the chair next to you. Express your feelings openly and wholeheartedly. Ask for forgiveness if you feel that you wronged your loved one in any way.
  • Write down your thoughts and feelings. Journaling is a wonderful, inexpensive way to release your concerns and worries on paper. It’s available when your therapist and best friend are not, and you can do it anywhere at your leisure.
  • Strong feelings of guilt, remorse, and grief will diminish over time.  If they continue to haunt you, seek professional help.

I’m still working–on forgiving myself for not being the perfect caregiver. I’m not overwhelmed by it, and I’ve recreated a wonderful, fulfilling life for myself. But I remember my therapist’s words, “You’re doing the best that you can.” I know I did, and that just has to be good enough.

The Alzheimer’s Association offers programs especially designed to benefit people caring for a family member or friend living with dementia by providing more understanding and tools to help navigate the journey. For more information contact 800-272-3900, alz.org.

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 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.

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

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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.

15 Ways to Instantly Diffuse Anger

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Young woman doing upward dog stretch, yoga.

Whether you’ve been caring for a loved one with dementia for a month or more than a decade, you’ve probably felt anger. Anger about having to listen to your care partner ask you for the hundredth time what’s for dinner, even though they have already eaten. Anger about having to downsize your world because you don’t have time to enjoy your previous social life. Anger about having to leave your career because you need to care for someone at home. The list goes on and on.Caregiving for someone with dementia is so hard. Some doctors think of caregivers as hidden patients because they are more likely to suffer from health problems stemming for stress, anxiety, anger, depression, and the inability to take good care of themselves.

It might be helpful to understand why you are feeling angry. You may not be aware of lingering feelings that fuel the fire. But there are ways to diffuse anger, which is one of the culprits that contribute to caregiver stress, depression, and poor health.

Are you resentful?

This is a common feeling that many caregivers share, especially if you are the eldest daughter and are caring for a parent. And it’s no wonder. Do your siblings step in to help with an ailing parent? Has your career advancement been put on hold? Is caring for a spouse destroying your dreams of travel or retirement.

I was only 48 when my husband was diagnosed with younger-onset Alzheimer’s disease. And damn right I was resentful. Our youngest was just starting college and we were empty nesters. It was the time in our life that we were supposed to have more freedom. My parents were getting older and had numerous health issues. I was part of a caregiver sandwich. Not the one where you care for a spouse and children at home simultaneously, I had to fly back and forth to tend to my parents’ while caring for my husband. It was hard and exhausting, and I was resentful. I complained to my best friend that my life wasn’t supposed to be like this.

Are you frustrated?

Have you tried various modalities to help your loved one “get better” and not seen any improvement?

Are you exhausted?

It’s no wonder. You need to take care of yourself. Exhaustion and burnout can bring feelings of anger to the surface. Please read: Preventing Caregiver Burnout with Good Nutrition and Foods that Support Neurotransmitters. https://wordpress.com/post/barbracohn.com/5204

Do you feel guilty?

It’s been years since my husband passed away. But I still feel guilty about the times I got angry or the times I went out to enjoy myself. My therapist used to say to me: “If someone told you the story you’re telling me now, what would you say to them?” I’d say, “You’re doing the best that you can.” That’s the right answer. You are doing the best that you can, and I have to remind myself, even now, that I did the best that I could. (Maybe I need more therapy to totally release those feelings of guilt.)

If you fly off the handle when your loved one annoys you or when you haven’t gotten enough sleep, try some of these anger diffusers for immediate relief.

  • Take a deep breath. Breathe in for 4 counts, hold for 4 counts, and release for 4 counts. Repeat twice more.
  • Make sure your loved one is safe and take a brief walk outside. If the weather is bad, walk up and down the stairs. If you can go outside, engage your loved one in an activity or have them watch television. Or just walk away from the situation and go into another room.
  • Put on some uplifting music. “Happy” by Pharrell Williams will definitely make you happy, I guarantee!
  • Call your best friend to vent.
  • Keep a book of inspirational quotes on your night table. Grab it and read a page. Sit there a moment and breathe.
  • Do jumping jacks or a few yoga postures. Corpse pose, legs up the wall, down dog. It doesn’t matter. Choose a few and do them.
  • Don’t lash out at your care partner. Rather than regret hurtful words, respond with an “I” statement or divert his/her attention. “I know you’re upset. I feel frustrated, too, etc.”
  • Use humor. Make a joke, put on a funny YouTube video.
  • Take yourself, your care partner, and your dog (if you have one) for a walk.
  • The British custom of making a cup of tea really works. Make a cup of green tea for added relaxation.
  • Use lavender oil to calm you down. Either put it in a wall plug-in diffuser or spritz your collar or a tissue that you can put inside a shirt pocket.  For more information about the use of aromatherapy to reduce stress, improve immunity, reduce agitation, and to promote relaxation read chapter 18 “Aromatherapy” in “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” by Barbra Cohn.
  • Break open a dark chocolate bar and share it with your care partner. It reduces cortisol, the stress hormone that causes anxiety symptoms. Just a couple of pieces should do the trick.
  • Go into a quiet room and meditate.
  • Light a candle and put on some relaxing music.
  • Drink a tall glass of water, make an energy-boosting smoothie, or hot cocoa.

For more ways to destress, boost your energy and calm down, read “20 energy and stress fixes to use now!” https://wordpress.com/post/barbracohn.com/4998

If you continue to have anger issues, it might be good to speak to a therapist. It definitely helps to belong to a support group. To find an Alzheimer’s (and other dementias) support group in your area call 800-272-3900 or visit: https://www.alz.org/help-support/community/support-groups gclid=Cj0KCQiA7qP9BRCLARIsABDaZzhho3nQIye6hhfVM3umD7WeqWOeanDCfVcfmbF8Ld9MN5cGdPOAyCAaAjC7EALw_wcB

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.

Is it okay to leave a person with Alzheimer’s home alone?

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Confused woman at home alone

This is a tricky question. The short answer is it depends. It depends on a lot of things. But if you are asking the question, the answer is probably no.

Use this assessment questionnaire. These issues are difficult to think about, let alone deal with. But if you have a sense of unease when thinking about your care partner’s abilities, it’s time to put safety precautions in place.

  • How far along in the disease is the person? If the person is in the moderate phase of dementia, the phase when they need help with basic daily activities such as bathing and brushing their teeth, it’s not safe to leave him or her home alone.
  • Do they get easily confused?
  • Do they get lost walking around the neighborhood or in the house?
  • Do they follow you throughout the house?
  • Could they make a phone call if they need help or become anxious?
  • Do they still cook, make coffee or use the microwave? Do they forget to turn off the stove or oven? If so, they should not be allowed to cook any longer.
  • Are they able to make themselves something to eat? If not, could they find food that has been prepared for them, or are they able to find a snack?
  • Do they wander?
  • Do they recognize dangerous situations such as fire?
  • Are they susceptible to scam phone calls? Are they apt to provide private information?
  • Can the person engage in enjoyable hobbies or activities such as gardening, knitting, wood work?
  • Can they distinguish between a family, friend, neighbor and stranger if someone comes to the door?
  • Is it easy for them to toilet without assistance?
  • If there were an emergency in the house, could they leave and seek shelter?
  • Is there a possibility the person could damage or destroy your personal property if they got highly agitated?

Keep your care partner safe from wandering

There’s nothing more frightening than discovering that your care partner has wandered out of the house and is nowhere to be found. If the weather is very hot or very cold this could turn into an emergency situation. Or if the person needs a medication at a specific time, it could become a matter of life or death.

Here are some ways to reduce this risk.

Never leave your care partner alone in the car, even for a quick stop.

Hide the car keys. I had a neighbor whose husband took the car keys and drove off into an isolated area. Although the car was found, he was never seen again. It was an unspeakable tragedy.

Camouflage the exterior doors with curtains, a poster, or sign that says, “Stop,” or “Do not enter.

Don’t leave shoes, hats, coats, or keys near the exit doors. All are reminders of leaving home.

Inform your neighbors so if they see your care partner wandering around the neighborhood, they can alert you or the police, or gently guide the person home.

Have your care partner carry a photo ID, and wear a medical bracelet. Put labels inside their coat, hat, etc.,

Project Lifesaver is a program offered by police departments. Some police departments offer wristbands at discounted rates or at no charge. To find out or enroll in Project Lifesaver, contact your local police department and ask if they participate. Call Project Lifesaver International Headquarters at (757) 546-5502 or visit the Project Lifesaver website.

Enroll in the MedicAlert https://www.medicalert.org/ and Alzheimer’s Association’s safe-return program. Read about it here: https://www.alz.org/help-support/caregiving/safety/medicalert-with-24-7-wandering-support. For a fee, participants receive an identification bracelet, necklace or clothing tags and access to 24-hour support in case of emergency. You also might have your loved one wear a GPS or other tracking device.

Read Dr. Laura Struble’s excellent article “How to Minimize Wandering in a Senior with Dementia” in which she says it’s important to first observe the person and try to figure out why your care partner is wandering or trying to leave, what they are trying to achieve, and where they want to go. https://www.agingcare.com/articles/help-a-senior-with-dementia-who-wanders-167541.htm

Safety first is always a good motto. It might take a little work and effort to put these safety measures into place, but it will definitely be worth it for your own peace of mind and for the health and safety of your care partner.

Care for the caregiver

If you are the caregiver of someone at home, it’s vital that you take care of yourself and get out of the house, hopefully, for at least a walk every day. During the coronavirus pandemic, you aren’t doing as much as you normally would outside of the house, but try to take a daily walk.

If you’re depressed, learn about 20 natural remedies that can uplift your mood. https://wordpress.com/block-editor/post/barbracohn.com/5720 Or, 20 energy and stress fixes to use now! https://wordpress.com/block-editor/post/barbracohn.com/4998

If you aren’t able to leave your care partner even for a short walk, it’s time to get respite care. When the time came for my husband to need full-time care, I hired someone to be with him husband twice a week so I could get out of the house. Is there a neighbor who would be willing to come in for 30 to 60 minutes twice a week? This might be tougher during the pandemic. But while the weather is still warm, a care person could take your loved one for an outing, sit on the porch with them, or go for a drive.

Be safe. Be well. Take care.

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.

Is your loved one in denial about their Alzheimer’s diagnosis?

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After my husband had a heart attack in 1994, a friend told him that he appeared to have one foot in heaven. Morris was more focused on the celestial world and less engaged in his life on earth. He hibernated in his home office, and spent just a handful of hours at his business office each week. He watched too much television, and filled much of his day meditating. His greatest joy was participating in spiritual singing groups.

But I knew something was very wrong. I had an aunt who passed away from Alzheimer’s disease so I was familiar with the symptoms. When Morris started getting lost driving around town, when he departed for a road trip with our son and left behind his suitcase, and when he couldn’t give a friend’s son directions to the high school that Morris had graduated from, I suspected Alzheimer’s.

Morris thought I was ridiculous and refused to see a doctor. It took two more years before he finally agreed. After ruling out metabolic diseases, depression, nutritional deficiencies, and a brain tumor, the diagnosis was quick and clear. Yet, Morris continued to disbelieve that the doctor said he wouldn’t be able to drive in a couple of years.

There’s actually a term for denial of diagnosis. Anosonosia is the medical term for a person who lacks the insight of awareness to understand their own condition. A person with Alzheimer’s can refuse to believe that they have the disease because their brain isn’t fully capable of understanding the illness. Or the person might be in denial because of the stigma attached to having dementia or Alzheimer’s.

How can you help your loved one?

  1. Don’t keep reminding the person of their diagnosis. Instead, be supportive and allow him/her to do as much as they are capable of without taking over for them.
  2. They most likely feel depressed or bewildered or scared, or all of the above. Be a friend and let them know you are there for them.
  3. Listen to their rants, their feelings, their fears. And know that their outbursts of anger are not personal, although that’s difficult. Usually the person closest to the patient is the one that is subjected to the most anger and frustration. Your loved one is scared of how their world is falling apart. You are probably just as scared. Join a support group. The Alzheimer’s Association near you offers support groups for both the person with dementia and for family members. It is a god-send. https://www.alz.org/
  4. Encourage your loved one to do things that will reduce symptoms of the disease. Exercise, socialize (which may be difficult during the pandemic), listen to music, plant a garden, do art projects. There are dozens of ideas to reduce stress for both the patient and the caregiver in my book “Calmer Waters: The Caregiver’s Journey Through Dementia.” https://www.amazon.com/Calmer-Waters-Caregivers-Alzheimers-Dementia/dp/1681570149/ref=sr_1_1?s=books&ie=UTF8&qid=1543875890&sr=1-1&keywords=calmer+waters
  5. Pharmaceuticals for Alzheimer’s help to slow down the progression of the disease. Encourage your loved one to take what the doctor has prescribed.
  6. Although there is no magic bullet, natural supplements also help. Read: “5 Things that Help Dementia that your Doctor Probably Hasn’t Mentioned.” https://wordpress.com/block-editor/post/barbracohn.com/5277
  7. Focus on eating a Mediterranean diet that includes fish, lots of fresh vegetables and fruit, nuts, and healthy fats—olive oil. https://wordpress.com/block-editor/post/barbracohn.com/5170
  8. Help your loved one decrease use of cigarettes and alcohol.
  9. Emphasize a structured routine including getting to bed on time.
  10. Beautiful and simplify the environment with uplifting music and fresh flowers.

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.

Activities for people who have Alzheimer’s disease and other dementias

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sea stones painted by the children on the beach

During the early stages of Alzheimer’s, your loved one might continue to enjoy their favorite activities. But as the disease progresses, he or she will probably withdraw from activity.

If you’re a caregiver taking care of someone at home, this is when things become challenging. How do you keep your loved one engaged without getting stressed and frustrated?

I hired someone to take my husband out a couple times a week for a drive, walk, movie, ice cream, etc. If you can afford it, and can ensure safety measures during the pandemic, respite care can help ease the boredom of watching TV all day. And it can help you get out of the house to do errands, go to doctor appointments, or just take a walk.

Whether you’re a full-time caregiver or occasionally drop in to visit a friend or loved one with Alzheimer’s, here are some activities to try.

*Fold towels, washcloths and hand towels, socks.

*Sort coins.

*Paint with water.

*Make potholders with a child’s loom.

*Rake leaves.

*Weed flower beds.

*Sort through junk mail, open and tear it up.

*Play bingo.

*Go for a ride.

*Play with Play-Doh https://playdoh.hasbro.com/en-us, clay or Kinetic Sand. https://kineticsand.com/

*Dust and polish the furniture.

*Cut out photos from magazines and make a collage.

*Create an “art gallery” with photos, prints, or original artwork.

*Listen to audio books.

*Watch funny YouTube videos of babies, kittens, puppies, etc.

*Color in coloring books.

*Plant an inside herb garden.

*Lace cards.

*Set up a bird feeder outside the window.

*Set up an aquarium.

*Use rubber stamps to make cards for children in the hospital, etc.

*Look for rocks and then paint them.

*Collect seashells (if you live near a beach), and string them and/or paint them.

Art Therapy

Read about how one caregiver heped her mother make paper paper flowers and find a purpose: https://barbracohn.com/2017/09/26/need-something-to-help-your-loved-one-find-a-purpose-how-one-caregiver-discovered-that-art-therapy-can-be-rewarding-and-stress-reducing-for-herself-and-her-mom/

Here are a few things you can do by yourself and with your care partner.

“Art Exercises for Caregivers” by Meg Carlson, chapter 11 in my book Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia.

  1. Making an Inside/Outside Box

Materials:

  • Boxes-shoe box, tea box, metal tin, etc.
  • Mixed media-crayons, paint, markers, glue, feathers, felt, rocks,

Decorating a box allows the artist to reflect his/her persona or face that is shown to the outside world on the outside of the box. Decorating the inside of the box is an opportunity to express the internal feelings and conflicts that are private or feel too big to find words to express. Use whatever materials that are available to decorate the outside of the box, and then the inside of the box to express these feelings.

Outside Box: How do you experience being around others with your loved one? What do you share with the outside world about your process/how do you share?

Inside Box: What is really going on inside of you each day? What isn’t shared with others that have an impact on you?

What has this process, or your imagery expressed to you? What kinds of responses are you having?

  1. Daily or Weekly Mandalas

A mandala is a circular image. It begins with a circle drawn on a page. It can be any size and any media can be used.

Materials:

  • Paper: Bristol, Watercolor, or mixed media (6×6 is a great size)
  • It is small enough to be done in a brief sitting, and large enough to have room for several images or areas of focus.

Pencils, markers, watercolor, colored pencil, pastels, or crayons are all great.

A version of mandala exists in many spiritual traditions (rose windows in Cathedrals, Navajo and Tibetan sand paintings, Buddhist imagery, etc.) Mandalas can be used to support focusing attention, as a self check-in tool, to express emotions in a contained space (circle), for establishing a sacred space, and to aid in mindfulness and mediation. Carl Jung, through his own art process, came to realize that mandala paintings enabled him to identify dysfunctional emotional patterns and work towards integration and wholeness. 

  1. Color-Texture-Pattern Feelings Portrait

This process is about awareness of how much is going on in each of us at any given moment. It is an opportunity to just GET IT OUT through color, movement, and expression. The imagery is usually abstract. It is the process of expressing that is beneficial here, not the finished product. Feelings are difficult to have, and when they are expressed visually they can be difficult to look at. But that is okay. If you use this process, when you are finished, take a moment to witness it like a loving friend. Then just set it aside. If your image invites a redo or edit, you can come back to it and work with it, even tear it up and re-create it. If not, let it go. The materials will support you to express emotions and that is their purpose sometimes …. to help you create something that is not necessarily pretty, but honest. That is their gift to you.

Materials:

  • Small to medium paper, mixed media paper is sturdy. Taped to surface is best. When you prep ask yourself, What size is my expression today? That will tell you what paper size to use.
  • Pencils, markers, watercolor, colored pencil, pastels, or crayons are all great.
  • This can be done between 5 and 25 minutes. It is simply the process of choosing colors and making textures and patterns that express the layers of feeling present. Let the speed and movement be an extension of your expression. It will be unique every time.
  1. Two Inch Window Drawing

The goal is to work with detail and discernment to create a bird’s eye view. Another way to use this tool is one of magnification, to zoom in to one aspect of something larger; examples could be to feel a single sensation, filling a small (contained) space with just what is magnified. Used as a daily or coping practice it may serve to redirect concentration or focus energy and attention, provide containment while titrating an intense sensation. They take between 1-10 minutes to complete. Think Macro and Micro… what would be most helpful, to step back or lean in?

Materials:

  • Paper: Bristol, watercolor, or mixed media (2×2 or 4×4)
  • Card stock scraps come in several colors, and can usually be found at craft stores.
  • This drawing is small enough to be done in a brief sitting, and can even be a single set of colors.
  1. Process: Journey Drawing

Materials:

  • Paper: Bristol, watercolor, or mixed media (6×6 or larger)
  • Collage materials, or a material you enjoy (fabric, craft papers, natural materials, etc.)
  • Chalk/oil pastels, pencil, watercolor

Where are you in this journey? Emotionally … physically . . .personally . . . socially? Is there stuckness . . . is there movement? What colors, shapes, textures represent where you are right now? What colors feel supportive of your journey or give you strength? What emotions are present for you about your current life, about being a caregiver? Can you think of any supportive guides/helpers that you have met along the way? How has your identity or personality been challenged or changed in this process? Who in your life is accepting these changes, who in your life are having difficulty accepting the changes?

What has this process, or your imagery expressed to you? If you had a chance to respond to it, what kinds of responses are you having? Are you in a different place in your journey than you assumed/thought/hoped? What are the qualities of where you feel you are in your journey as a caregiver? As you have moved through different stages, what has each stage offered you?

Lastly, choose a color that feels strengthening, a color that will help you move into the next stage of your journey. Now create a final piece of you drawing that will offer you strength and power when you look at it.  Be one of the helpers for yourself in this moment of your journey.

6. Process: Breath Drawing

Materials:

  • Oil pastels or chalk pastels
  • Large paper
  • Your breath
    With one color in each hand, draw your breath. Notice the qualities of your in breath (short, stunted, deep, long, interrupted, fast, shallow) and allow your hands and the colors to express it. Same with the exhale. What are the qualities present in your out breath? Move each hand/arm in a circular motion with the expression, notice how the lines change over time. Notice similarities and any shifts. Follow your own breath with soft awareness.

What has this process, or your imagery expressed to you? What kinds of responses are you having?

For more information on activities for people living with Alzheimer’s visit the Alzheimer’s Association’s website: https://www.alz.org/help-support/caregiving/daily-care/activities?gclid=CjwKCAjwzIH7BRAbEiwAoDxxTqQOIQhxq3c2b-k5u12ZU9oZixTf9PAfWpl3X-AGcE2eU9GKGRYxyxoCeRQQAvD_BwE